Transcript
Will: [00:00:00] Knock,
Dr. Jared Rubenstein: knock,
Will: hi! Knock, knock, hi!
Hi, welcome to Knock, knock, hi with the Glockenfleckens. Oh my. What?
Kristin: You’re just a little bit, uh, punchy. Ooh,
Will: I’m Dr. Glockenflecken. This is Lady Glockenflecken. I’m Will Flannery. That’s Kristen F Flannery. Do
Kristin: you remember my name? Do I need to worry about you? I do. I do. Sometimes I wonder if you need a cognitive skills
Will: test.
Do you remember the one time that, um, that it was like when the Kardashian show was like super famous and, and like it was on. And I was just like, we were hearing about Kim and Courtney and Chloe. And then I said something like, God, I’m so sick of K names. Yes, I
Kristin: do remember that. And
Will: you’re like, you know what my name is, right?
And I was like, oopsie.
Kristin: [00:01:00] Oh no. Here’s
Will: some flowers. I was like, who would name their children a K word?
Kristin: Yeah. Thanks for that.
Will: Yeah. That was not my finest hour.
Kristin: No. You’ve had a few, uh, flubs
Will: over the years. That’s why I don’t, I don’t speak much. You always get mad at me for not speaking. Well, that’s why, because I always screw up whenever I talk, say the wrong thing.
Anyway. See, you’re doing it right now. I’m doing it right now. So we got a great episode. Yeah.
Kristin: We do. You may not think it by the title. We’re by the topic rather, but we’re going to talk about why
Will: you’re wrong. Yes. We are talking, uh, to Dr. Jared Rubenstein. He is. An associate professor of pediatrics at Baylor College of Medicine.
He’s a pediatric palliative care physician and We talk a lot about kind of Misconceptions. Yep about really what palliative care is What [00:02:00] do palliative care physicians do what is the whole palliative care team do because there’s lots of people in this team It’s a multidisciplinary approach. Yeah, I
Kristin: will just say I encourage everybody to listen to it because I think that a lot of specialties and just general healthcare.
Uh, has a lot to learn from palliative care, and we should be putting their principles into practice more. So, this is not only entertaining, but, yeah, useful.
Will: And Dr. Rubenstein, very well spoken, yes, very, very clear, and, and just, and a nice guy. Nice, very wonderful person, um, and, uh, it made me think about, like, why didn’t I, do you think I could have been a pediatrician?
Maybe not a pediatric palliative care, because that’s a lot of talking, and I’m not into I think you’re too tall. To be a pediatrician?
Kristin: Yeah, look, I mean, the kids are like way down there. You’d be like a giant. You’d scare them. You’d scare the children. You think I’d scare the children?
Will: I do. I think I, I, I think I’d be wonderful as a pediatrician.
Kristin: You are great with our children. I know, [00:03:00] I do know that. I am
Will: terrible to other children, though. That’s the subtext here. I am just god awful to every child out there, except for my own, no. Um, I, actually, I don’t, I think the training. I didn’t, when I went through pediatrics, I was kind of like done with it.
You know, like it, it was like, like a bad time. No, I just, it wasn’t that I hated it, it was third year, but I just remember like, by the end of it, I was like, okay, I’m ready for something else. Yeah. And it’s just like, yeah. I don’t think, um, I don’t think it’s
Kristin: What do you, what do you think made you feel that way?
Will: Well, I really like procedure stuff. Like, I like being in the operating room, and so it’s like, uh, I mean, I guess pediatric surgery is a thing.
Kristin: Right. Of all kinds. There’s pediatric ophthalmology. Why didn’t you do that?
Will: Uh, I didn’t like strabismus. Ah. It’s hard. It’s
Kristin: very, it’s very hard, everyone. Didn’t want to do it because it’s
Will: hard.
I did a knock, knock, [00:04:00] hi, uh, no, sorry, knock, knock, I, about, um, uh, amblyopia. Oh, that’s a fun word
Kristin: to say. Amblyopia. It feels like your mouth is on a playground.
Will: It is a fun word to say, amblyopia. I try to work it into every casual conversation I can. Yeah, you should. Um, let’s see. What else? Anything else?
Should we get to it? Let’s do it. All right. Here is Dr. Jared Rubenstein.
Today’s episode is brought to you by the Nuance Dragon Ambient Experience, or DAX for short. To learn more about how DAX Copilot can help reduce burnout and restore the joy of practicing medicine, stick around after the episode, or visit nuance. com slash discover DAX. That’s N U A N C E dot com slash discover D A X.
All right, Dr. Jared Rubenstein. Thank you so much for joining us all the way from Texas. Is
Dr. Jared Rubenstein: that right? Yeah. Thank you so much for having me. Yeah. I’m in Houston, Texas. Yeah. Mild [00:05:00] stomping
Will: grounds. That’s right. I grew up outside of Houston, uh, Deer Park, Texas. That’s where they lighted the refineries just to give this permanent glow to the whole area.
Dr. Jared Rubenstein: That sounds about right. They claim to fame. How long have you been down there in Texas? About 10 years. Uh, never envisioned moving down here. Came down here for medical training and then met my wife here who was also in medical training and then we’ve been here for the last 10 years or so.
Will: There it is.
You meet the significant other.
Kristin: That’s why you’re here.
Will: That’s exactly, that’s why I’m in Morgan. Um, well, so, so we got a lot, uh, we, a lot of questions, a lot of things we want to know about you and your job. Um, first of all, I, I need a, um, a, a palliative care character in my skits. So I’m hoping you could help me out.
Uh, what, what is a palliative care doctor like? Like what, cause unfortunately, and this is probably something we’re going to get into. I haven’t interacted with a lot of palliative care, which is a problem, right? Yeah. In
Dr. Jared Rubenstein: general. No, I’d be happy to. Although I think, didn’t you have [00:06:00] one meeting the palliative care doctor at some point?
Will: I did, I had like a med student’s first rotation in palliative care,
Kristin: but I Oh yeah, and it was like a blanket and stuff. Yeah, like
Will: I haven’t, I haven’t, I had to do actually quite a bit of research to try to figure out like what to include in that skit. I remember
Dr. Jared Rubenstein: feeling very seen and the fan was, was next level.
That was, that was a great addition.
Will: Fan therapy, that’s a
Dr. Jared Rubenstein: thing, right? Yeah, yeah, absolutely. It’s the number one non pharmacologic treatment for shortness of breath. You blow, do you blow it in their face? Yeah, either like a big real fan or even just like a little handheld fan. There’s, there’s randomized controlled studies that it helps with shortness of breath people have from lung disease.
Interesting. Yeah,
Will: there you go. I don’t know the physiology
Dr. Jared Rubenstein: behind that. I think some of it is, is. working on the brain, that just the sensation of the airflow helps. But I think I’ve also seen descriptions that it’s something like trigeminal nerve related that you stimulate the trigeminal nerve, which helps with I was
Kristin: like a reflex to like Yeah.
Yeah. Interesting.
Dr. Jared Rubenstein: But See, I know things. In [00:07:00] terms of what a palliative care doctor is like, everyone assumes that we’re going to be sad, broken people because of the stuff we see. And we, by and large, are not. And people sometimes even find us delightful. And, and I think part of that is that we, oh my goodness, we, we normalize the, we, we all see hard stuff.
We, we do see really hard stuff, but everyone in medicine sees hard stuff, I think. And, and I think where we’re different is that we sort of normalize coping skills around it. That we, when we’re going to the bedside and I have, whether or not I have trainees with me after, certainly at the end of the day, but even sometimes after a particularly challenging visit, we’ll take five minutes and sit at a little table in the ICU and chat and say, you know, how, how was that for you?
What are you, what are you feeling at the end of this one? Both if we have trainees, it does sort of the educational debrief to go through the, the like, you know, the communication strategies we use, the pain management we use, but even whether or not there’s trainees, it’s also a place for us to have that safe space to kind of talk and process together a little bit because it lets us sort of get, get some of the feelings out and think through it a little bit so that we can [00:08:00] leave it before we go into the next room and I think that’s something unique that palliative care doctors do and palliative care healthcare teams do.
Honestly, palliative care, it’s sort of at heart an interprofessional sport. So we have doctors, nurses, social workers, chaplains, that all kind of work together and so much of that I learned from the other non doctor folks at the team because they’re all better at life and sort of. Managing stuff in the hospital in a way that, that is healthy.
And I mean, they don’t just
Kristin: take their feelings and just shove them
Dr. Jared Rubenstein: down. Exactly. They don’t, they say we should talk about them. And at first I was like, I’m a little skeptical. I’ve always been told you’re not supposed to, but, um, it turns out it works. And when we have other trainees come with us from other fields or other people in the hospital, we sort of try to normalize that.
And I think. We maybe see harder stuff on average, but I think everyone, if they did more of that and sort of talked about feelings and normalized that what we do is hard, people would be happier in medicine and maybe there would be less burnout. So I want to go
Will: back a little bit and, and talk about your motivation for getting [00:09:00] into this field.
And how did you get? Exposed to it in the first place.
Dr. Jared Rubenstein: Yeah, sort of a little sideways. Um, as a kid, uh, my dad is an adult home critical care doctor and my mom’s a social worker. And so our dinner table conversations at night were sort of like little, little palliative care interdisciplinary team meetings.
And my dad wouldn’t talk about sort of the heroic intubations or the stuff like that. He would talk about having hard conversations with people and he’d talk about supporting patients at the end of their life. And then my mom would provide context and we’d just all talk together and I never thought about it as a career because I was scared of hospitals and couldn’t go anywhere near hospitals as a kid.
Um, but then ultimately when I decided to kind of circle back and thought maybe I would do med school, those conversations always stuck out and when I got into med school I realized there was a field that was palliative care that was that. And I did an elective for adult palliative care and was just blown away and loved it and that’s what I thought I was going to do.
And then I did my pediatrics rotation later and loved that and I thought maybe pediatric palliative care is a thing? And it wasn’t where I was a med student [00:10:00] or a resident. But was able to do an elective at another hospital and just loved it. And, um, you know, it, it felt like a home for me and it felt like it was the kind of people I wanted to work with, the kind of work that I was passionate about.
And I honestly, I think I have the best job in medicine. I think the ability, and now that we have a medical training program and fellows and residents and nursing students that come through, you know, we, we get to talk and teach about it all the time. And I, I love it. Is there
Will: anything you were like, no, I definitely don’t want to do that for a career.
Dr. Jared Rubenstein: For sure. Anything, any of the surgical stuff, anything that required an or any, um, you’re out. I think those are the big, you guys
Kristin: are like exact opposites. He wants to, nothing to do with talking about feelings and you want nothing to do with operating. Absolutely.
Will: That’s why I’m expanding my horizons here.
This is great. There’s
Dr. Jared Rubenstein: a need for both of us. I think we all find the things that that interest us too. And, and there’s a lot, a lot of need.
Will: Yeah. And we have to understand. We have to understand each
other
Kristin: too. That’s right. Find some common ground. That’s right. I think though, before we go any further, we really have to [00:11:00] address.
There’s this huge misconception, which I have a soapbox about it, so I can’t even imagine what yours must be like, which is that palliative care does not equal hospice care. Yes.
Dr. Jared Rubenstein: Can you tell us about that? Absolutely. And I’ll say first, I love that you have a soapbox about this. I love both of y’all’s soapboxes.
I mean, I think for starting with humor and broadening to take on talking about the hard stuff in medicine, talking about being a caregiver, talking about and trying to take down the insurance industry, everything y’all have done sort of as a, as a offshoot of the humor has been hugely impactful and I’m grateful for it.
Thanks. And so, for me, I mean, I think hospice, to me, is under the umbrella of palliative care. So, palliative care, I think, is, is sort of the umbrella of how to support someone who has a serious illness. Whether it’s from pain or symptom management, whether it’s to, so that they don’t have to be so lonely when they go through the healthcare system, whether it’s to support them or their family, whether it’s to help make hard decisions that come up down the [00:12:00] road and whether to kind of plan for the future.
And then also for someone that’s not able to survive, survive their illness, it’s to take care of them at the end of their life and make sure that they get the death that they deserve and want. And then hospice is the way you do all those things for someone who is within the last six months of their life often, but not always in their house.
Will: And so palliative care can be Incorporated into the medical care of a patient at any time then, right? Like you get
Dr. Jared Rubenstein: diagnosed, go ahead. Yeah. I think ideally from, from diagnosis, from with any kind of serious illness, there should be palliative care involved. And because there’s only so many of us and we don’t yet have enough people doing the work of palliative care, we talk a lot about primary and subspecialty palliative care.
So subspecialty palliative care is a team like mine where. We come and do the whole interprofessional support. So doctor, nurse, social worker, chaplain, even bereavement support, kind of all working together. But then primary palliative care is what we hope all doctors know. So a little bit of pain and symptom [00:13:00] management, how to have hard conversations with people, how to support somebody, how to deliver difficult news in a way that’s, that’s clear and compassionate.
And we’ve always seen both the work of our team and nationally, we want to provide great palliative care, but we also want to kind of raise the level of play of primary palliative care so that everyone has these skills.
Kristin: Boy, do I have thoughts and opinions with a capital T and O about this issue. Uh, can you talk about what kinds of support?
palliative care provides, like some tangible
Dr. Jared Rubenstein: examples. Yeah. And so, um, like I say in pediatric palliative care, I always say, you know, we do a few things. We, for, for people that are making medical decisions, either on their own or on behalf of their child or spouse or loved one, it’s an incredibly lonely place to be.
I mean, it’s, you’re asked to make these life or death decisions and then given no support. And it feels like in this world where Nobody goes out to dinner or nobody buys anything on the internet without reading eight million reviews and asking for expert opinions. We were all [00:14:00] taught at some point in medical school that we have to be like, no, you know, sorry, we’re out.
I just lay out all the options and then only you can decide what to do. And that’s awful. And, and we wouldn’t, I mean, we don’t do that at anything in our life except for, for medical decision making. We were all taught that’s the way to do it and it, and it just isn’t. And so I think we, we try to practice and bring on what’s called shared decision making.
So, you know, thinking about our understanding of the medical situation and then getting to know the people we’re taking care of as much as possible and then sort of marrying those two things together to say, you know, based on what you’ve told me about what’s, what’s important to you and your values and based on what I understand is going on, maybe this could be a way forward.
What do you think? And it maintains people’s autonomy because they can take or not take that recommendation, but we hear over and over how, how it just helps with the loneliness and isolation and the burden of feeling like these decisions are resting solely on their shoulders. So there’s that piece of support.
There’s The planning for the future, just sort of helping people, you know, navigate the journey of serious illness and walk down that road and kind of accompanying them on the journey for, for whatever happens. And, and, you know, I always say that in palliative care, we [00:15:00] want to hope for the best, but plan for everything.
We want to have a plan if we get all the things we want, we want to have a plan if we don’t get all the things we want. Um, and so that element of what we call advanced care planning or just sort of thinking about the future, if people want to do that, and then sometimes just the simple social support of, you know, hospitals are lonely places and sometimes, you know, especially in pediatrics where I talk to the parents and say, you know, there’s a lot of people here at the hospital thinking about your kid, but part of our team is we’re just going to come hang out with you and see how you’re doing and see how you’re holding up with all this because I That doesn’t happen often enough and, and, um, that’s a big part of our role sometimes just kind of being with people and talking to them about what’s hard that day or what they’re hoping for.
Yeah. So
Kristin: that gets to what I am always talking about with probably my biggest soapbox is co survivorship, right? So that could be parents when there’s a child as the patient, uh, for me, you know, obviously I was the spouse of a critically ill patient. Um, and I. I just have so many horror stories of how it went in the [00:16:00] hospital, um, not just for the cardiac arrest, but the two cancer occurrences as well.
Like, best case scenario, you just get, as the co survivor, you just get totally ignored. Worst case scenario, uh, I feel like I got a pretty good example of that, where I got kicked out of the hospital for not staying in a particular room. Um, and there’s context around it. It was, it was during COVID and, and they put me in a room without cell phone signal.
And so I would go, you know, out of that room where I could still see the room to see if doctors came in, but get a little signal and then go back and forth and back and forth. And they, they kicked me out. Um, But I, and that’s an extreme example due to hopefully extenuating circumstances, but I think things like that happen a lot of you’re either overlooked or you’re put in places that really don’t meet your needs in some way or make things harder for you.
So I, in that moment, I remember thinking, I. I wish there was someone here for me, right? I, I was only allowed in the [00:17:00] hospital as an end of life case. And so I was all by myself. I didn’t get to bring someone with me. Um, I didn’t get to be with him either. I was just in this limbo and I remember thinking, why is there no one here to like, I feel like my skin is about to disintegrate and I’m barely keeping it together.
Who’s here for me, you know, and the answer was no one in my case. So, will you, will you go into a little more detail about what kinds of ways palliative care can be useful to people in that position, the co
Dr. Jared Rubenstein: survivors? Yeah, so first, I’m so sorry for that experience. It sounds awful and so isolating. Yeah, it was.
But, you know, it’s not your fault. No, but I, I mean, I think, and I read the, the wonderful piece you wrote about the, I think it was the nurse that sort of talked to you like a person. Mm hmm. Roger, yeah. And it was both beautiful and also devastating that it was, it was publication and noteworthy that you were treated like a person.
And, um, that I think in palliative care, we talk all the time about personhood. So I [00:18:00] mean, I think whether it’s seeing the patient in front of you as a person, which we’re not good at in medicine, or seeing the caregiver or co survivor or co patient as a person that we’re even worse at doing. And so, um, like for me, when I, when I meet someone for the first time, I’ll say, you know, tell me, tell me about you and, you know, I’ve, I’ve read your chart, I know the medical stuff.
Like I want to know the other stuff. And, and I like, um, There’s a team in Winnipeg, Canada that created something called Dignity Therapy that’s this amazing legacy work that, um, is, was just mind blowing and, and I got to go to the training. Of course it was in Canada. Yeah, it feels right that it was in Canada for sure.
But they’ve sort of pared down. All of their work into what they call the one patient dignity question, which is the, or the one, the dignity, the dignity question, you know, what do I, what do I need to know about you to take the best care of you? And I really liked that question to get it kind of the personhood of what’s going on, but then sort of asking the same things to, to parents in pediatrics or to the spouse or family in, in other healthcare, you know, what do I need to know about your family to take the best care of you?
and normalizing that, you know, and I think [00:19:00] this is one of the things that I think in pediatrics we actually do really well that, you know, we could, we could maybe teach some of the adult folks about, which is, you know, we practice what’s called, uh, patient and family centered care by design. And so we, in all of the things we do, we’re taught how to talk to people in ways that are non jargony about medical stuff.
We’re taught how to engage patient and family. I mean, something we always say is, you know, um, we may be the medical experts, but you’re the experts in your child. So tell us what we need to know about them. And I think normalizing that, you know, People are, are the experts in their, in their spouse or in their, their father or their mother or their, their significant other and sort of bringing that voice to the table, I think is something that we do by design in pediatrics that I know doesn’t happen in adult medicine.
I have a
Will: question for, really for Kristen. So what, or actually, I mean, for both of you, really, what would, in that situation that you were in, I’m curious, what would the conversation typically look like? To bridge the gap, to get Kristen [00:20:00] to somebody like that, like somebody, a palliative care specialist, whatever, because I think that seems to be a big barrier, right?
Is how do we get that ball rolling? How do people know that that’s even an option? It’s an
Kristin: issue with the structure of the system, that there’s just no protocol, no standard, like, okay, when someone like this comes in, you do X, Y, and
Will: Z. So what would you, Jared, what would you recommend for? for a doc, any kind of doctor who’s, who’s taking care of me and also seeing Kristen there, um, to say, to, to broach that, the topic
Dr. Jared Rubenstein: of palliative care.
So, I mean, this is one where I, I think in part, Um, this is a good, more territory for primary palliative care rather than subspecialty. I’m not sure everyone who, I wish everyone who had something hard in the hospital got a whole palliative care team, but, but I think until that day is possible, I think just normalizing that, you know, looking at the person who came, came with the patient and, and sort of talking to them together and looking at both of them during the conversation, asking, asking both parties if they have [00:21:00] questions.
I mean, something that I, that I. to you recently is for things where you know, especially in pediatrics, we have sometimes really stoic kids that are not going to complain about pain and, and we want people to complain about pain because that’s how we know how we’re doing. And as the team that’s there hoping to help them feel better and manage their pain, we need them to complain about their pain so we know what’s going on.
And so I’ll say, you know, I’m gonna ask you, I’m gonna ask you some questions. I want to know how, how your pain is doing, how, if you’re able to do the things you want to do. And then I’m also going to ask your mom those same questions because sometimes people are better at speaking up from someone else.
And, and I think that same kind of thing would work in adults. It’s sort of naming and normalizing that we’re all better at advocating for someone else than we are for ourselves and, and using that as a way to bring that voice to the table. And then for, for the, um, I mean, I think the experience that you had during being in the hospital and being left alone during COVID.
I mean, that you’re right. There’s, there’s extenuating circumstances with COVID that there were, there were no extra people anywhere in the hospital, but I think we do things kind of akin to that all the time. And that we, we, we don’t, we don’t sort of normalize the hospital experience. We don’t help people cope.
We don’t help people [00:22:00] process. And I mean, I had a really interesting experience when I was a fellow, um, when I was a palliative care fellow, because my insurance was through the children’s hospital, any healthcare I needed or any. And a lot work. If I got it at the Children’s Hospital, it would be freely covered by insurance, but if I got it somewhere else, there would be a co pay.
So at some point I needed to have a contrast CT. And so I was like, well, I guess I’m going to the Children’s Hospital for my contrast CT. And so I’m in the waiting room with all these other kids around and, and a woman walks up to me and I’m in the middle of my work day and You’re
Will: presumably someone, you know, in, in your You know, late 20s, early 30s.
Dr. Jared Rubenstein: Yeah, early 30s me in a waiting room with a bunch of little kids and their parents and A woman walks up to me and she says hi I’m a child life specialist Would it be okay if I talked to you and I said sure like I love child life specialists But I’ve never I’ve never been the target of one before Yeah, and so she says Um, have you ever had a contrast CT before?
And I said, no. And she says, you know, let me tell you, would it be okay [00:23:00] if I talked to you about what’s going to happen and what to expect? And I said, sure. And she sort of talked me through the process and it was great. It was, it sort of normalized the experience. And then she said, also, I want to tell you, when they inject the dye, you’re going to feel like you wet your pants.
And I was like, I’m so glad you told me this because I’m like there in my work clothes, lying on the table. I would have freaked out if I felt like I wet my pants in the middle of a contrast CT. And it did feel exactly like that. And. Oh yeah. I think it, I, it was this sort of lightbulb moment for me that, like, I was not a child, but hugely benefited from that, and I, and I think We don’t do a good job.
I mean even thinking about my own health care with health care of loved ones Just explaining what’s happening sort of talking through what to expect and I think something like that whether you’re waiting for your loved one to come out of surgery or You’re having a procedure or you’re doing anything just sort of someone there like an adult life specialist to talk about you know what What happens in hospitals and what to expect because nobody knows and it’s as terrifying as it is to have all the things going on It’s even scarier because there’s so much [00:24:00] unknown And if there was someone there both as like a support person to kind of talk through and normalize the process I think that would go a huge way to make health care less bad.
Yeah,
Kristin: so why don’t we have adult life specialists? I mean, serious question.
Dr. Jared Rubenstein: I suspect because there’s no one to, nobody’s going to pay for it. And I think until like it’s a, there’s a lot of stuff in pediatrics that are like non billable services that, um, hospitals do because they feel like it’s the right thing to do.
And, and it’s It’s nice to support children, but there’s, I think, what about children who’ve grown up? Yes. And yeah, I, I mean, I advocate for anything for that. I think, I think there’s a lot of stuff that would make healthcare better and kinder that until there’s either a financial incentive or everyone decides it’s just the right thing to do.
So we’re going to do it. Aren’t going to happen. Right.
Kristin: So how do we make that?
Dr. Jared Rubenstein: I think some of it is doing what you’re doing and talking about this stuff publicly and talking about the horrible experiences we’ve all had with the adult healthcare system because So, [00:25:00] public
Kristin: shaming
Dr. Jared Rubenstein: is what works. There’s worse ways.
Because at the end of the day, I think, well, everyone’s going to need healthcare at some point. Most of us go through healthcare without having, most of us go through our lives, and at least our early lives, without having bad stuff happen to us, or without having Significant encounters with the health care system.
What’s that like?
Will: Well, a big part of it’s also just raising awareness, you know? Yeah. Like
Kristin: Right, because it is an issue that gets overlooked. Like that’s, that’s a big part of the problem is that no one even sees the problem. So people
Will: are talking about it. People are talking about it. They, you know, they know they’re just exposed to this issue that’s going on.
And, I think that, you know, that’s the first part of really any advocacy is just education, you know? Right,
Kristin: yeah. Yeah, I would have loved adult life specialists. Uh, and also I think there’s a lot of healthcare design that goes into this, like. Oh yeah. It’s a horrible, you know, feeling inside of a hospital.
And there are like [00:26:00] Environmental things we can do to change that, to make it less horrible feeling.
Dr. Jared Rubenstein: Yeah. Absolutely, and I think, I mean, children’s hospitals tend to be nice looking. I don’t know if y’all have spent any time in children’s hospitals. Yeah, and there’s art, and
Kristin: a lot of bright light, and yes, you guys are doing it right.
And I
Dr. Jared Rubenstein: think that’s another thing I’ve been talking to some friends about recently, like, maybe we should write about this, that are there things that adult medicine could learn from pediatric healthcare? Because adult Yes, please! Children’s hospitals aren’t kid like, they’re just nice. Nice. And
Will: why is that?
I’ve never even questioned that. It’s what I’m talking
Kristin: about to make you feel more comfortable.
Dr. Jared Rubenstein: But they are.
Kristin: Yeah. Yeah. There’s so much we can do to make it feel a little bit better. Like, I will give an example. My grandfather, you are laughing at me, he’s, I’m, I’m gonna be on a lot of soapboxes on this episode, so trigger warning for anyone who doesn’t like my soapboxes.
I love it. Um, my grandfather was, uh, one of the kind of pioneers of this idea, he was an OBGYN and [00:27:00] he, he did, um, he created birthing centers. This was in the 1960s, right? Um, on the West Coast, yeah. 60s, I don’t know, don’t ask me, I’ll get it wrong. But yes, early, it was early on, it was before. Now that’s kind of just a norm, right?
That it’s a little more homey feeling inside of a birthing. You have a birthing suite, you might have a tub, you might have a nice bed. You know, it’s still a hospital bed, but it’s like, anyway, didn’t exist back then. Fathers were not allowed in the birthing rooms. You know, just all these things where it’s very cold and ugly and sterile and, you know.
Uh, and he sort of turned all that on his head, on its head, and made it very home like. You know, he decorated there, he put curtains up, and nice wallpaper, cause again, it was the 60s and 70s, uh, and he even went so far as to give the new mothers, um, a steak dinner once they were ready to eat, because you use so much energy and lose a lot of blood and all that stuff, right?
Will: So They’re in
Dr. Jared Rubenstein: like farmland out there, so Yeah, no, it [00:28:00] sounds amazing. Yeah.
Kristin: Yeah. The steak dinners were like the thing. Yes, that was like the top tier. It was the culture. Anyway. The point is, he saw the humanness in the situation, right, and he tried to build the humanness back in. So, you know, you don’t have to go as far as steak dinners, like that is above and beyond, but, you know, things like that, of just trying to think, how can we make this room more comfortable?
How can we make this building more comfortable? You know, when I was waiting while he was, you know, getting checked out before he could go into the ICU, I, I remember thinking, like, I wanted a, like a weighted blanket or something, right? Like there’s a lot of sensory issues when you are dealing with critical illness or medical trauma, like even as the co survivor, right?
Like a family member or caregiver that. There’s just could be some easy solutions to that if just a little bit of thought went into it. I mean, you made a joke about the [00:29:00] blankets and the fan and all of that, but there is a real nugget of truth in that, which is that, that there is this sensory, you want some sensory Dignity, like you were talking about, of, you know, providing, providing some of those things.
You probably can speak to it better than I can, but there, there is just something that happens on a very basic sensory level that, that needs
Dr. Jared Rubenstein: attended to. Absolutely. I mean, and I think what you’re highlighting too, is that those, those of us that give healthcare and those of us that receive healthcare don’t extend, don’t understand each other’s experiences.
And unless you’ve been through both sides, which most, most people haven’t. I think it’s a total black box and I think one of the things that I’ve seen is that I think is great is the rise of the patient advocate community and people that are either patients themselves or advocates on behalf of patients and are speaking publicly or going to conferences and are talking about their experiences to, and I think, I think More and more partnerships between those of us in medicine and patient advocates are going to be huge in terms of, you know, learning what we can do better [00:30:00] that we have no idea about because it’s in that black box of things that we don’t experience.
Will: I’d like to talk a little bit, kind of more on a granular level with what you do as a pediatric
Dr. Jared Rubenstein: palliative care. Are you
Kristin: telling me it’s time to step off my box? I will. I’ll
Dr. Jared Rubenstein: step down. I think your soap boxes are great. No, no,
Will: no. It’s all related. It’s all related. But, but because this is pediatric palliative care.
It’s a world that Not all, not a lot of us in medicine and even outside of medicine really have, have, uh, a window into, um, and so what I imagine seems like, like almost an impossible job is like you’re having kids at different stages of their development and they’re different stages of understanding.
And so when you’re, you mentioned delivering bad news earlier, and obviously that’s like a big part of the job. How do you approach the different age groups because we’re talking, you know, young kids like six, eight years old, and then also, you know, 12, 13 [00:31:00] as a, you know, people that have an eight and an 11 year old, they’re, they’re, they’re not be any more different and, and, and their ability to receive information.
And so what’s your
Dr. Jared Rubenstein: approach? Yeah, no, that’s a great question. And it’s really individualized because your eight and 11 year olds are different from each other and then are going to be also different from somebody else’s eight and 11 year old. And so for a lot of that, I know I’ll shout out child life specialists again.
I mean that we really lean on their expertise aside from sort of making the hospital better and supporting people through stuff. Part of their training and expertise is, is having developmentally appropriate conversations with kids about hard things. And so a lot of what, what we’ve learned in pediatric palliative care, and certainly speaking for myself, I’ve learned from my child life colleagues.
And, I mean, I think the, the starting point is always, you know, what do they seem to know and what do they want to know? And just asking very open ended questions of, you know, what, what do you think’s happening? What do you want to know about? Um, what are you worried about? And then making sure when they ask a question, [00:32:00] you answer the question they’re actually asking and not the question you think they might be asking and going totally like, um, so asking them sort of what’s behind, like, why are you asking that question to sort of find out what they really want to know.
And then being, being clear and honest with them as possible. And I, I think what we, what we see is that most kids want to know what’s going on. Also, most kids seem to know what’s going on more than the adults in their life give them credit for. And, and I think for us in our work, that ends up being a really big struggles that it can sometimes feel like there’s a complicity between, and a well meaning complicity, but between a child’s parents and the healthcare system to not bring them into the conversation about hard things.
And, and what we often, what we often see is, I think the term for it is like shared mutual pretense where you walk in a room and something really bad is going on, and the parents are sitting on one side of the room looking sad, and the child sitting in bed looking sad, and you have the sense that they both know something really bad is happening, but the parent is trying to not scare their child more by talking about it, and then the child is feeling, man, it feels like something really bad is happening, but my mom doesn’t want to talk about it, so I’m not going to ask about it, and then [00:33:00] everyone’s sort of in their lonely corner.
And, And, and opening the door and creating spaces for people to have those conversations is a big part of our job and, and naming to parents sometimes who, who from a place of protection don’t want to have this conversation with their child, sort of talking about that and saying, you know, like, obviously they, they, only they know what’s right for their kid.
I don’t, I don’t want to tell them how to, how to parent or what they should say or not say to their child. We’ve got some data on it, there was a great study from, I think Norway, it was one of the countries that has a functioning public health system, so they have data on everyone. And um, they did, they made follow up calls to parents of children whose kids died from cancer in the past handful of years, and asked them, did you talk to your child about the fact that they were dying from cancer, yes or no, and did you regret that choice?
And what they found was that some people did talk to the kids and some people didn’t, but of the population who did talk to their child about their impending death, none of them regretted it years later. And of people that didn’t talk to their child, about a third or so regretted it years later, and particularly if they felt like the child knew what was going on.[00:34:00]
And so we talk about that all the time with people that, you know, we, we can’t, we can’t tell you what’s right for your family. But in my experience from working with other people in situations like yours and what the data shows is that. Kids seem to know more about what’s going on than is actually, than, than they’re being allowed to talk about.
And we know that most people. feel good about their choice if they choose to talk to them about it.
Kristin: It’s hard to know what to say sometimes, so I’m glad that there are child life specialists. And I don’t know, do we have any, do we have any content creators who are child life specialists can give everybody some, some ideas? We need some. Well, tell
Dr. Jared Rubenstein: your friends. Yeah, I’ll give a shout out. I have a friend who trained as a child life specialist and then became a bereavement coordinator that, that we used to work together.
And um, her name’s Taryn Schuelke. She wrote a book called A Kid’s Book About Death. And it’s a sort of very simple, child friendly way to talk through hard stuff with your kid about death, whether it’s they’re asking questions about it, or they know someone that’s died, or they just, they want to know more, um.
And it sort of [00:35:00] provides those words for how to go through something like that. Yeah. That’s
Will: awesome. I have another question about engaging with, with young kids, but let’s take a quick break and then we’ll come back with Dr. Rubenstein.
All right, we are back with Dr. Jared Rubenstein. So Jared, um, I want to hear specifically about, uh, teenagers because I’m, I’m my, we’re about to have a teenager. We’re close. She’s 11. You know, we talked about your interacting or, you know, uh, talking about difficult things. Um, it seems like it would be even harder with like a teenage patient because like, how do you get them to like, listen to you and, and engage with teenagers?
That seems hard. So what, what are you, what are your thoughts about, is this a? Do you, do you really enjoy that part of the job? Is it, is it, uh, Is it helpful
Kristin: when you’re not their
Will: parent? Right. Yeah,
Dr. Jared Rubenstein: exactly. Yeah. Yes. I have younger kids and so haven’t parented one yet, but I, I. [00:36:00] I think that teenagers prefer talking to anyone except their own parents.
And so, that’s something that we can leverage. And actually, a lot of people are scared of teenagers. I love working with teenagers. I think it’s some of the most, the most satisfying people to work with because they’re, they’re sort of on that cusp of adulthood where they want to be treated like an adult and we want to treat them like an adult and they’re often not given permission to.
And especially when it’s something like a, like a serious illness. that, um, if they’re, they may be even facing the end of their life and are not being allowed to give voice to it and talk about the things they want to talk about and sort of helping, helping teenagers talk about that and helping their families let them talk about and help them talk about it, um, when, when they’re afraid because they’re coming from a place of love and trying to protect their teenager and, and not make them think about something scary.
But I can assure you they’re almost already thinking about the scariest possible things. And, and, um, Right. So I love working with teenagers and, and I think, um, That planning for the future piece with teenagers is really interesting and I think some people Don’t want to and and truly are scared of it and don’t want to [00:37:00] talk about the what ifs and don’t want to don’t want to Plan for the future and for those teenagers, we would we would never push and make them talk about it But for most in my experience It’s the other way around that they that they want to talk about that they want to have voice and they want to there have A legacy they’re thinking about just as much as an 80 year old has a legacy they’re thinking about and wanting to Be able to do something about that.
And so, um, I think engaging them in that conversation and teenagers don’t love talking as I’m sure you know. And so finding kind of creative ways to do it. And I think one that I think about a lot on our team that, um, we were meeting with a, um, a teenager that, that had cancer and was really sick and, and all of the medical teams were hoping that we could sort of learn his wishes and learn what he was hoping as his illness got worse.
We’d all kind of tried talking to him and, and hadn’t really been successful in getting him to open up as, as teenagers often are. And then we found out that he really liked Hot Sauce. And so our, um, one of our amazing, uh, admin coordinators, um, Lindsay just that week before [00:38:00] had made our team a hot, a hot ones challenge and just sort of had fun questions.
I dunno if you’ve seen that, like the YouTube channel. Yeah. But, um, and so we had like 10 hot sauces and, and asked questions and you know, we thought, you know, there, there’s some of the hot sauce left over, maybe we can bring it by. What’s a hotter question than sort of anticipating your own mortality and thinking about, you know, the biggest questions in life?
And so we said to the guy, you know, what about this? We can, we can make a hot ones challenge. And, and, you know, there’s some stuff we want to talk to you about. Can we bring some hot sauces and give you some hot sauce and talk about it? And he said, sure. And it was amazing. And, and we, we got some hot sauces.
We gave them each one and started with the more mild questions and then got into some of the more serious stuff. And over the course of the next hour or so. We’re able to really get him to open up and talk about things in a way that was just beautiful. And again, that’s a shout out to interprofessional teams that I would not have come up with that on my own.
So it was me, it was our social worker, it was our grief and bereavement specialist, and we were all kind of working together to have these questions and, um, kind of got to the point where the visit sort of had a natural end and said, you [00:39:00] know, You know, thanks so much for doing this. Would it be okay if we, we came back tomorrow?
And he said, you know, that the hot sauces were kind of a lot. Um, I don’t think I could eat any more hot sauces, but can we talk about this stuff more tomorrow? And I was like, yeah, absolutely. And it was just, it was just this beautiful moment of feeling like, you know, we were able to give voice to him and let him talk about the things that, that he wanted to talk about, but that were hard.
Kristin: Yeah. That’s awesome. It’s so creative. I
Will: love it. How do you, how do you? How do you maintain your own mental health, you know, doing this? I’m sure that’s a question you get asked a lot and I’m sure it’s a lot like if if you told anybody like you’re a Pediatric palliative care probably the first thing would be like, oh my god.
How do you do that? How do you do that job? So what is it that keeps you kind of focused and engaged in the midst of all this, sometimes a lot of pain?
Dr. Jared Rubenstein: Yeah. And so it’s a combination. And I think the most common comment I get is, Oh, that’s so sad. And we all sort of joke in the field that like, that’s what we hear [00:40:00] all the time.
It’s like, Oh, that’s so sad. And then it ends the cocktail party. And I think for me, it’s sort of a couple things is that one, sometimes it’s really sad, but sometimes it’s also beautiful, like, like what I was just talking about, I think we get to be with people at really important parts of their life and really challenging times and forge these wonderful connections.
And so I think being with people is something I’ve always loved. And to me, even if we’re being them being with them in hardship, I get satisfaction from that knowing that I was sort of a part of their life at a really hard time and hopefully help them with something. Then a part of it too is normalizing, you know, that we should talk about this and support each other in it in a way that, you know, maybe we see harder and sadder things than average but everyone in medicine sees hard and sad things and we were all taught that we shouldn’t talk about it and that you can’t cry and you can’t talk about things and you have to just be a wall.
And, um, it’s something we talk about all the time. We talk about at the end of the day when we’re on service seeing patients, it’s something we’ll talk about even after the visit. Like, RICU has like these little tables that say 10 minute huddle space, like you can only talk for 10 minutes and after 10 minutes, you’re supposed to go somewhere else apparently, [00:41:00] but we will go sit at those tables and after a visit, you know, we’ll say, you know, how was that for you?
How are you feeling? Let’s sort of talk about and debrief and process a little bit so that we can leave some of it there. And if learners, We’ll talk about it, you know, what, what pain management strategies we use, what communication strategies we use to make it a teaching thing, but then also just a processing thing and the education for the trainees of that too, that to normalize that we should talk about this.
And, um, that, that’s been really helpful for me. Um, then also outside of stuff, being able to talk at the end of the day, and I’m a verbal processor, so sort of talking through things and being able to leave it at work so that when I come home to my family, Um, I, I’m not still kind of ruminating on everything from the day, hopefully, and then being able to come home to my lovely supportive wife and our two little kids who now are thankfully healthy and, and are not dealing with the stuff that we’re dealing with at the hospital and having that sort of, for me, I, um, I like the car ride home a lot is sort of that, that division and so, um, either listening to an audio book or a podcast and, and having something to have that sort of [00:42:00] 30 minute commute be kind of a, a reboot and then when I walk It feels like it’s a different part of life and that, that I can try my best to be present with my family regardless of what happened during the day.
Will: Sometimes that commute’s actually
Kristin: important. I know I, I have worked from home for the past. Seven years or something. Like even pre COVI. Uh, and that was one of the things that I missed the most actually. I mean, it’s the ni it’s nice not to have to commute, but at the same time, I, there’s no space to do that, right?
Like my workday ends when everybody barges in the door and now I have to be mom. Right? So yeah, that’s, there’s having that decompression time. Yeah. Yes. It’s so important. So, you know, when you get home, you need to give me 20 minutes is what I’m hearing. ,
Will: I pay, yeah. I’d be happy to. I’ll give you an hour. I don’t know.
Whatever
Kristin: you need. No, but that’s good advice for any kind of healthcare worker, right? Like you said, they all see hard things. You see disgusting things. So you know, just take a minute to process and talk about what you saw.
Dr. Jared Rubenstein: And just [00:43:00] normalizing that it’s okay to do that and our team will get called a lot to go debriefs for other teams if they’ve had a particularly challenging situation or a particularly challenging time.
And none of us are trained debriefers. We just go in and it’s not anything really fancy. We just say like, Hey. Sounds like y’all are having a hard time. Do you want to talk? And then people talk for an hour. And I remember after one of those, the, somebody said, you know, thanks so much for coming to talk to our team.
This was great. I really appreciate it, but I hope we don’t have to do this again for a really long time. And I said, no, no, sir. You have to do it every day. That’s, that’s, that’s what sort of makes you not have to get to the point where you need another team to come help your team is you just, you do it and normalize that we talk about stuff.
Kristin: It’s like a pressure valve, right? Like if you just let it every, you know, just a little bit at the end of every day It’s a lot more sustainable than keeping it tight all the time until it blows.
Dr. Jared Rubenstein: Absolutely.
Will: Explodes on everyone around you. I’m curious. What, what are there, are there any major barriers? so much of what I’ve been doing the last like six months is like looking at the health care [00:44:00] system and and the how it makes our lives so much harder, both patient and physician.
Yeah. So I’m curious, because, because this is a whole new world for me, palliative care. What are the, what are the frustrations and the barriers that you see, uh, in the course of your job with regard to either, you know, of hospital systems or health insurance, you know, problems that is, is, Prior authorization an issue for you in your job?
Like, how does that work?
Dr. Jared Rubenstein: Thankfully, not so much for me. I think sometimes for some of the medicines we use, there can be prior authorizations. But for me, that tends not to be a big part of my job, although I know it’s an awful, awful part of others job. Um, I’m glad it’s not a part of your job. Yeah, no, and actually, um, it’s one of the things that, that insurance actually in pediatric palliative care particularly has done something really interesting that we hope would get expanded that, um, so hospice in this country is confusing to everyone and I didn’t for sure didn’t understand hospice until I was a palliative care fellow.[00:45:00]
But it, you know, it’s a, it’s a philosophy of care. It’s an organization and it’s also, in our country, an insurance benefit. Just like everything, we found a way to sort of America it up and, and make it, like, not, not at all what it’s supposed to be. But, um, it, in this country, in order to sign on to hospice, because it’s covered under the same part of Medicare that covers hospitalizations and, and clinic visits and stuff, you have to essentially agree that you’re not going to go back to the hospital and you’re not going to pursue.
pursue curative treatment and you’re not going to do all the things that you’ve been doing for all of your illness, which for a lot of people understandably is a barrier. Like why, why would you give up all of these things? And so in pediatrics, actually, one of the really nice things that came in 2009 as part of the Affordable Care Act was that there was something called the Concurrent Care Clause that said if you’re on a public insurance, you can elect hospice and start hospice services as long as you qualify for them without having to give up anything.
And so you can get the benefits of hospice. You can have the doctors, nurses, social workers, chaplains coming to visit you at your house. You can get the symptom management, you can get the equipment in your [00:46:00] home, and you can still come back to the hospital if you want. You can still do your doctor’s visits.
You can still do curative treatment for whatever your illness is. And it’s been amazing and, and seeing how when you take away that barrier that, that people elect hospice care earlier and are able to get this fantastic palliative care coming right to their house. And then one of the downstream effects that’s been interesting from the policy side is that If you let people elect hospice earlier and see that they’re able to get medication management at home and symptom management and, and be able to be comfortable in their house, they actually go to the hospital less by, by choice and if, if they can get the things that they need in their home.
And because they’re doing that ultimately near the end of their life, they end up spending a lot less healthcare dollars because they, they have less prolonged ICU admissions and stuff like that. And so, what has been seen in pediatrics is that concurrent care has actually become cost savings. And, while the letter of the law is just for public insurance, so people with Medicaid or CHIP in pediatrics, now private insurances, out of the goodness of their own wallets, if [00:47:00] you talk to them about it, will often let kids elect concurrent care.
Because they, they anticipate that it will save them money in the long term. And so our, our hope and one of the things that from a policy perspective is that we wish that concurrent care was something that was eligible in adult palliative care and hospice too, because it’s better, it’s, it’s one of those things that, that both better care and actually saves the system money.
Well,
Will: you’re asking health insurance companies to think logically about things. Yes. It’s a big ask, I, I totally, that’s, that’s, that’s amazing, I didn’t realize that. Yeah.
Dr. Jared Rubenstein: Yeah, but I
Kristin: mean if it’s cheaper, like that’s what you, that’s the language that insurance companies speak and if you can find a way to make it cheaper by doing the right thing, then they’ll
Dr. Jared Rubenstein: do it.
Yeah. And so, those stuff for me are not the biggest headache in our job and I think for a lot of palliative care folks that one of the biggest headaches is that we feel like there’s, there’s some gatekeeping and that we’re not allowed to meet all the patients that we wish we could. Because there, there’s a stigma about palliative care and, and there’s this, there’s a sense that people are afraid of it.
And what we hear from, [00:48:00] from other healthcare workers all the time is like, you know, we don’t, um, we don’t want to send the wrong message. We don’t want to take away hope. We don’t want to scare people. And, and hope isn’t a thing that you can give or take away. Hope’s, hope’s a thing that you do. And, and, and people have hope for all kinds of different things and maintain it in the face of whatever news they’re hearing.
And it’s something that’s actually been studied in that, um, most people just haven’t heard of palliative care, both in the pediatric and the adult literature when you look at it, about 70 percent of people haven’t heard of palliative care, and the majority of the 30 percent who have feel positively about it, and then if you tell people about it, You take the people in both these studies, both in the pediatric and adult, and say, you know, if you haven’t heard of it, here’s what palliative care is.
And tell them, and they say, that sounds great. And there was a really cool study in children, and they asked parents of children with cancer, um, have you heard of palliative care? Would you be interested in getting palliative care involved early in your child’s cancer care? And then they even took it further and said, also, we want to let you know palliative care teams are the teams that help people who aren’t going to be able to survive from their illness.[00:49:00]
And that spooked some people and the parents said, actually, you know, that, that sounds scary. We don’t want to meet that team. But an even bigger percentage said, you know, I hope we don’t get there, but that sounds really important. And so if, if we ever got there, I would want to know that we had that team involved.
And so the literature over and over and in multiple studies in adults and kids supports that people either haven’t heard of palliative care and, or have a good feeling about it. And when you tell them about it, feel good. And so the question is, you know, where, where does the stigma come from and where does the test that people are afraid of it?
And they’ve done some more studies where they look at, um, the people that do have a negative conception about palliative care and, and certainly some people, there’s, there’s people you meet that say, you know, my uncle had hospice and they just came and filled him up with morphine and it was terrible.
Like, there, there’s those horror stories out there. There’s the perceptions that, that people bring their own, own negative biases to the table for sure. I don’t want to pretend like it’s this magical thing that everyone loves. More and more, what we see in the majority of people who had a negative conception about palliative care in these studies, it was actually, when you ask them where it came from, it was something they heard from other [00:50:00] healthcare workers.
And, you know, on our team, when we started our team at the beginning, um, we sort of kept a running list in the office that we’d ask the patients and families, have you heard of palliative care? And has your team told you anything about palliative care? And if they said something really noteworthy, we’d put it on the list.
And so the list is filled with things like, don’t be scared, but we’re going to call palliative care. And the person said, you know, I didn’t know why I was supposed to be scared, but now I’m scared. Or I remember being in the middle of a consult and the mom said to me, Hey, I’m enjoying talking to you, but can you tell me why your team has a bad rap?
And I say, yeah, what do you, what do you mean? And she said, you know, the doctor that told me about you said, we’re going to call palliative care and I know they have a bad rap, but don’t worry, it’ll be okay. And I said, I think we have a bad rap because people say stuff like that. And I remember one of the ones that sticks out in all of our minds that we saw written in a chart once was Um, a doctor writing a patient note and then at the end was this little addendum that said, and then I met with the family and I knelt with them and I prayed with them and I told them not to be afraid of palliative care.
And man, I don’t know if I’ve [00:51:00] ever been set up for failure like that. That
Kristin: should be embroidered on a pillow.
Dr. Jared Rubenstein: It’s so ridiculous. And so I think we hear from, we hear from a lot of other healthcare workers that, you know, palliative care has an image problem or palliative care has a PR problem. And I’ve started pushing back more and more and saying, you know, I don’t think we do.
I think we’re kind of set up to fail and it feels like we’re being sabotaged to some extent. And that was what sort of a frustrating consult like that was where I think we all get all the time where somebody says, you know, I really think you’ll, you’ll want to meet this family, but Maybe don’t say that you’re palliative care and maybe just talk about pain management and don’t talk about anything scary and also have you consider changing the name of your team because the name palliative care is scary and it’s all these things
Will: and Do your job the way I want you to do your job, not the way you need
Dr. Jared Rubenstein: to know how to do your job.
Nobody else would get that in healthcare. Nobody else would do that to another Yeah. Person, I don’t think. I
Kristin: feel like this gets back to this misconception that palliative care equals hospice. Yes. Right? Yeah, right. That, uh, sending someone to palliative care is essentially saying, we don’t think you’re going to survive.
[00:52:00] Yes. Yeah. Which is just not what palliative care is. Like that is not accurate. That is one branch.
Dr. Jared Rubenstein: Absolutely. It’s kinda
Will: like whenever the emergency department says, well, you know, I don’t think they’re actually gonna come, but I’m gonna go ahead and call ophthalmology .
Kristin: Yes, same thing. Yes,
Dr. Jared Rubenstein: you’re right.
Will: Although in that case they’re, they’re actually probably true about that.
Dr. Jared Rubenstein: They’re not telling they’re lying about mean, there’s all these things that, that we load and all, all these biases and, and I think . Right. And, and I think your, your, your work is, is. sort of testament to this that I think we all carry around all these biases about other healthcare fields and that when we, when we go through training, we learn the knowledge and skills of our field, but we also learn the biases of that field.
And I think It often feels like when a group of doctors meet, it’s like a meeting of all the biases about the other field that you have to kind of wade through before you can have a conversation about it. Yeah.
Will: Well, I certainly, uh, have some ideas for some content now.
Dr. Jared Rubenstein: Yeah, right? I know. This has been very enlightening.
There’s a lot of kind of ridiculous things in here. I’m so glad. I look forward to it. I felt very seen by your last palliative care doctor video. [00:53:00] Why do
Kristin: we have that misconception though? Like, where does this start? Is it because Like, is it in the history of how palliative care originated, or, I mean, if anyone could benefit from palliative care, why don’t we see it as something that anyone
Dr. Jared Rubenstein: can have?
So in part, some of it’s the history that palliative care actually did. So there was hospice before there was palliative care, um, and so palliative care to some extent was, was born out of the hospice movement. Some of it is, I think, just our culture. I mean, I, I think we, as Americans, are, are We’re hard topic defining, we don’t like looking serious or scary things in the face, and I think we used to talk about this a lot more than we do now, and I think medicine to some extent is just an offshoot of our culture, that all the people have these things, and I think it’s layered onto it.
in medicine, the added sort of death phobia and, and phobia of talking about illness, that it can also feel like a failure in people, that, that medicine, it’s gone from being a sort of a healing specialty as a curing and fixing specialty, and that [00:54:00] there are some things that can’t be cured or fixed, and instead of looking at that as this happened, we should support this person however we can, it’s looked at as we failed or I failed, and everything’s terrible now, and there’s nothing that can be done.
But in reality, there’s a lot, and doctors say that all the time, there’s nothing more that can be done. But what we always remind people is, you know, there’s always more that can be done. It may not be the thing you thought you were doing before, it may not be cure, it may not be a fix, but it, we can, we can still value this person’s life and their dignity and make sure that for however long they live, we can take care of them the way they want to be taken care of to the end of their life.
Wise words.
Will: I like it. Yes. Um, and before we go, I want to just also give a shout out to your, um, social media platform. Uh, I don’t know, you know, I, I’m pretty tuned into the healthcare community, uh, and I don’t see a lot of palliative care content. And so I, I fully support your, what you’re doing on social media.
Uh, you’re on YouTube, right? You have a YouTube channel? Yeah, I’ve
Dr. Jared Rubenstein: got a YouTube [00:55:00] channel. That’s, um, just my name, Jerry Rubenstein. And then, um. Twitter or whatever Twitter’s become, um, Instagram, um, at, um, at Dr. J. Rubenstein. And actually there, there’s a, there’s a fairly sizable palliative care community out there.
And I maybe, I think it’s one of these things that there’s sort of parallel, parallel conversations happening.
Will: Yeah. I need to, I need to find them.
Kristin: You do. I mean, we’ve, we’ve had one on before, but. Yes. Yes. But yeah, there’s a bunch more. I, Well, we’ll get into it later, but yeah, there’s some that I know about too that I would love to have on.
Will: Oh, good. Um, and, uh, uh, by the way, you’re, I, I watched a couple of your, your animated, your little satirical animated videos. Great work. Oh, thank you. No, I think I Like the, uh, there was one you posted like four years ago with the fire, firemen
Dr. Jared Rubenstein: coming in to Yeah, that was, that was actually the original one.
That was the one that I, I never envisioned this being a thing, but that was coming back from that consult where I was told, you know, maybe change the name of your team. Don’t talk about, don’t talk about scary things. Maybe just say you’re the pain team [00:56:00] and maybe change the name of your, your field. And we get that all the time.
Kristin: Also change your hair, your clothing and
Dr. Jared Rubenstein: your given name. Yeah. And I was walking back to the office and I had, I thought, you know, this is like, if somebody’s house was on fire and somebody called the fire department and said, before you go in fire department, Don’t, don’t scare the family. And it was just, it felt so ludicrous.
And I made that first video and thought that was kind of going to be it. And then people If
Will: you could, if you could not say the word fire when you’re putting out the fire, that would be
Dr. Jared Rubenstein: great. And, and people really latched onto it. And then it became sort of four years, and I think maybe 60 or 70 videos later, that I think as someone that, you know, was raised on the Simpsons in South Park, I think satire and animation can help people lean into really hard topics in a way that, that can be disarming.
Definitely.
Will: Well, keep it up. It’s great work. Thank you. And thank you so much for joining us. It’s, it was really enlightening and interesting.
Dr. Jared Rubenstein: Yeah. Thanks so much for having me. It’s been wonderful talking to y’all. And again, thank you for the work you do. I think using humor as the gateway to advocate for, for hugely important things has been, has been awesome to [00:57:00] watch y’all do.
Oh, thanks. Appreciate it. Take care.
Will: Hey, Kristen. Yeah. Our anniversary is coming up. Yes, that’s right. You know what I
Dr. Jared Rubenstein: got you? What? A
Kristin: bouquet! Oh, you shouldn’t have.
Will: They’re Demodex mites! That’s why you shouldn’t have. Look how cute those faces are, and the little legs.
Dr. Jared Rubenstein: It’s kind of cute, I have to admit. You know what these things
Will: do? What? They cause you to have like, itchy, red, irritated eyelids.
That’s not cute. Well, it’s a disease. It’s actually a pretty common disease called Demodex
Kristin: Blepharitis. How do you know if If you have it, what does
Will: it look like? Well, you end up with this crusty, flaky buildup on your eyelashes, and it’s pretty easy to see if you just look at them under a microscope.
Pretty gross, though. Yeah, yeah. So, well, you don’t get grossed out. Okay.
Dr. Jared Rubenstein: You gotta get checked out.
Kristin: Okay, that’s a fair point. Yeah.
Will: You gotta go in. And we’ll look at your eyelids. You just go to eyelidcheck. com to get more information. Okay. That’s E Y E L I D CHECK [00:58:00] DOT COM to get more information about Demodex blepharitis.
These cute little guys.
Kristin: Yes, the most romantic anniversary gift you’ve ever given me. You’re welcome.
Will: What a fascinating conversation. I
Kristin: really love that topic of palliative care because, I mean, for all the reasons that we talked about, there’s so many misconceptions, but I think it could be such a useful tool. In dealing with so many tricky parts, um, of, of patient and family interactions. I hear that question all the time of, well, what can we do?
What can we do? I think step one, maybe, could be refer to palliative care. Yeah. You know? Adult
Will: life
Kristin: specialists. Adult life specialists, make them a thing. Yes. You need to create some videos about all this and then that’ll get people talking.
Will: Yes, ma’am. Absolutely. I’ll get right on it.
Kristin: Make Pediatric Palliative Care funny.
This,
Will: uh, that was, um, [00:59:00] yeah, it’s, there are certain gaps in my comedy repertoire.
Kristin: Yeah. Some of them are glaring.
Will: Well, it’s just hard to figure out. Partly because I don’t have a lot of personal experience. Like, you know, that, that was like, I maybe have met three or four. Palliative care doctors, like in
Kristin: all of my years of my experience comes more from, from experiencing the gaps in the healthcare system.
This is where
Will: maybe you could have used a palliative
Kristin: care person to talk to. Right, exactly. So I always try to shine light on, on those things, but I mean, there’s so many cases, not even just like
Will: ours. Um, let’s uh, should we do a fan story? Yeah. Let’s do it. Alright. This is uh, uh, a story sent in by one of our listeners.
This is from an anonymous source. Hmm. Alright. Once again. I
Kristin: always like when they’re anonymous because it makes you think like, hmm, is this a, why is, why did you feel the need to be anonymous? This must
Dr. Jared Rubenstein: be a good one. We’ll find out.
Will: So, um, the story goes, I’m a video [01:00:00] interpreter. And most of my calls are, so it’s like a language interpreter, like a video, like if you need an interpreter in the clinic or in the hospital, there’s like, you just, you set up the video screen and you can get an interpreter for that language.
It’s like certain companies that do this.
Kristin: So it’s live. It’s live. But it’s via the
Will: internet. But it’s like a Zoom call with an interpreter. Gotcha. So, uh, I think that’s what, what this person’s talking about. I’m a video interpreter and most of my calls are medical, either from hospitals or clinics, labs, ambulances, et cetera.
And one may think that the most difficult part is terminology because I’m not a medical professional. My diploma says translation and translation studies. There you go. And it is, it’s difficult because you get all kinds of calls from neurology, urology, cardiology, labor and delivery, all the places.
Ophthalmology, they mentioned. Um, and basically any field that exists and how are you supposed to know every term when it’s impossible for even doctors themselves to know just [01:01:00] everything in their field? But no, the hardest part is the logistics. Internet connection can be bad. Patient nearly is nearly deaf.
Medical professional not paying attention or people on the other side of the screen just not understanding how interpreters work. For example, This is not so much a story as a just, let’s just rant about, I love it. I’m all for it because we need to up our game with interpretation. Absolutely. In medicine.
Um, Other people on the side of the screen are not understanding how interpreters work. For example, why do doctors think that if I’m speaking nonsense, that’s just me, the interpreter, and not the patient saying it? Or there was one time that the patient interrupted what they were saying with, oops, I wet myself.
Oh no. And when I interpreted that, the doctor looked at me and replied, okay, interpreter, can you at least transfer us to your colleague?
Kristin: Now I understand the need to be anonymous. This is
Will: amazing. Just why? Or it sometimes happens that you get a call with [01:02:00] the other parties already in the middle of their conversation and the first thing you hear is, so the test results show that you indeed have problems with your cervix. It’s like the first thing.
Yeah. And you think it’s a gynecology appointment, but then the patient looks at you as if she’s scandalized and you find out that’s a neurology appointment and they were talking about cervical spine. Oh, whoopsies.
Kristin: Not cervix.
Will: Or our connection is funny and you tell the ophthalmology patient they need an EKG instead of an ERG.
It’s a very amusing job.
Kristin: Oh my goodness. I can’t even imagine. It’s like all the communication’s hard enough in the same
Will: language. I will say when we. We, we, we have a video interpreting system that we use in clinic and it is, it is so hard sometimes for all the reasons that person just mentioned. The connection, the, the, the volume, can the patient hear the interpreter?
It’s, it’s a lot of times it’s very dark in the eye clinic. So it’s just like, if, if I can, if I can get like an in person interpreter. [01:03:00] Which, unfortunately, those are, like, hard, very hard to find sometimes. Um, that’s, like, a million times better than a video interpreter. But I do want to thank all the, all the interpreters out there who are doing the video interpreting.
Because sometimes that’s all we have. Really hard. Sometimes that’s the only option. And you have patients that come in with a very uncommon language. And What would you do?
Kristin: Like, do you have interpreters for each language, or are you meant to know multiple languages as the
Will: interpreter? That’s a good question.
Do we have, let’s, if you’re a medical interpreter,
Kristin: reach out to us. Yeah, we need someone to come
Will: on and tell us about it. I want to hear about medical interpreting and your thoughts and, um
Kristin: I bet they’ve got some stories. I mean, we heard some just right here.
Dr. Jared Rubenstein: Absolutely.
Will: How do you, uh, differentiate EKG versus ERG?
ERG is Electroretinogram. Okay. It’s like the EKG for ophthalmologists. Okay. You put tiny
Kristin: little electrodes on the retina?
Will: Yeah, actually [01:04:00] not on the retina, but like across the front of the eye and there’s like electrical signals and stuff. Yeah, it’s kind of crazy. They only do it in like, I have a lot more
Dr. Jared Rubenstein: questions,
Kristin: but I feel like I have to do them
Will: off the air.
Maybe, maybe, maybe we need to get a pediatric ophthalmologist in here. You should do They’re the ones that do
Kristin: ERGs. You should do a Knock Knock Eye, where you discuss ERGs. That’s a
Will: good question, that’s a good It’s called an idea. It’s a good idea. God, it’s God, I’m losing my mind. Uh, send us your stories.
Knock knock hi at human content dog. Did I really just forget the word for
Kristin: idea? That reminded me of when we had a newborn and we’re so sleep deprived and you couldn’t think of the word for syrup and so you called it pancake sauce.
That has stuck with me.
Will: Oh, man. Well, I want you to let us know if you have any word finding difficulties and what words you find difficult. Uh, let us
Kristin: And are they longer than four letters?
Will: Send us your [01:05:00] stories or your thoughts on our episode today. Lots of ways to reach out to us. Email us, knockknockhigh at human content.
com. You can hang out with us on our social media platforms. We’re on all of them. Uh, we also have, uh, uh, our Human Content Podcast family over there on Instagram and TikTok at Human Content Pods. Got some great pods. Yeah. Good pods. Fantastic pods. Check them out. Human content. Thanks to all the wonderful listeners leaving feedback and reviews.
If you subscribe and comment on your favorite podcasting app or on YouTube, we can give you a shout out like FJR4205 on YouTube said in regard to the latest Knock Knock Eye episode. The fact that most of your content is made after your kids are put to bed explains a lot about the vibes.
Kristin: I take issue with this comment.
Well, some of them are. A lot of them. I don’t take issue with the comment. I, I, just that a lot of the times what’s happening is it’s [01:06:00] It’s the middle of the evening, or a Saturday, or something, and I am behind the scenes doing a lot of things to make it possible for you to be
Will: in here. Of course you are. I will say, we alternate bedtime routines.
This
Dr. Jared Rubenstein: is true.
Will: So on the days when you are doing the bedtime, that’s when I’ll record those episodes a lot of times. That is true. But yes, uh, I have this wonderful lady here that’s picking up the slack whenever I’m You have to say that. Whenever I’m screwing around on the internet and podcasting. Uh, full video episodes are up every week on my YouTube channel at DGlockenflecken.
Lots of cool perks over on our Patreon. We got a Patreon. Yeah. A little, nice little community we got over there. Bonus episodes where we react to medical shows and movies. Hang out with other members of, uh, the Knock Knock High community. Uh, we got bowling on Wednesdays. Bowling on Wednesdays, okay. We got, uh, you know, every now and then we do a little movie
Kristin: night.
Yeah, [01:07:00] sometimes we do a Pin the Tail on Grob Goblin.
Will: Yep, yep, we got early ad free episode access as well, interactive Q& A livestream events, and much more! Patreon. com slash Glockenflecken or go to Glockenflecken. com Speaking of Patreon community perks, new member shoutout to Pietra. Aww, I like that name.
Pietra,
Kristin: Pietra, Pietra, Pietra.
Will: Uh, also, uh, as usual, shout out to all the Jonathans. Patrick, Lucia C, Sharon S, Omar, Edward K, Steven G, Jonathan F, Marion W, Mr. Grandaddy, Caitlin C, Brianna L, Leah D, KL, Rachel L, Keith G, JJ H, Derek N, Mary H, Susanna F, Mohamed K, Aviga, Parker, Medical Meg, Bubbly Salt, and Pink Macho!
Patreon roulette. Random shout out to someone on the emergency medicine tier. Dr. Funky! Thanks, Dr.
Kristin: Funky. I love that name.
Will: Dr. Funky. And thank you all for listening. [01:08:00] We’re your hosts, Will and Kristen Flannery, also known as the Glockum Flecken. Special thanks to our guest today, Dr. Jared Rubenstein. Our executive producers are Will Flannery, Kristen Flannery, Aron Korney, Shahnti Brooke, and Rob Goldman.
Our editor engineer, Jason Portiza. Our music is by Omer Ben Zvi. Notice I put Rob at the end. Oh, you sure did. You changed it
Kristin: up. I changed the order. Does that make it easier for you to get it right?
Will: I said it real clearly that time. You did. So maybe it
Kristin: does help. It was so clear that it was a little jarring.
I was like, wait, is that correct? That was correct. I
Dr. Jared Rubenstein: think
Will: the whole, the whole time, the, the, the names have been out of order, uh, which, um, is, you know whose fault that is? Whose? Rob Goldman’s fault. To learn about our Knock Knock Highs, Program Disclaimer, and Ethics Policy, Submission Verification, and Licensing Terms, and to have our release terms, go to Glockenplugin.
com or reach out to us at knockknockhigh at human content. com with any questions, concerns, or other things that Rob has gotten wrong. Knock Knock High is a human content production. Rob’s a hockey
Kristin: player.[01:09:00]
Will: Goodbye. Hey,
Kristen. You know, sometimes I come home from work and I just, like, feel really run down.
Kristin: Yeah, because, you know, despite popular opinion, you actually do see a fair number of patients every day.
Will: I do. My clinics are pretty busy, but I’m not the only physician that feels that way. So many people feel overwhelmed and burdened.
So much that work life balance feels
Kristin: impossible. Yeah, nobody gets into this job for the paperwork.
Will: Most people, definitely not me. And, uh, but let me tell you about the Nuance Dragon Ambient Experience, or DAX for short. Tell me. This is AI powered ambient technology. It sits down in the room with you. It’s transforming healthcare with clinical documentation.
That writes itself. Ooh, that sounds nice. It’s like having a
Kristin: Jonathan there. Yeah, perfect.
Will: And I got some stats for you. Ooh, I love stats. You’re going to love this. Seven minutes is saved per encounter by reducing clinical documentation [01:10:00] time by 50%. Seven
Kristin: minutes. That’s an entire surgery for you. Yeah,
Will: that’s what DAX can do for you.
And across all specialties, 70 percent of physicians report a reduction in feelings of burnout and fatigue. That’s pretty incredible. It really is cool technology. Uh, to learn more about the Nuance Dragon Ambient Experience or DAX, visit nuance. com slash discover DAX. That’s N U A N C E dot com slash discover D A X.
