Understanding Full-Service Supportive and Palliative Care Medicine with Dr. Justin Yu and Dr. Scott Maurer

Released: 1/24/2023

In this episode of That’s Pediatrics, our hosts talk with Justin Yu, MD, MS, and Scott Maurer, MD, both pediatric palliative care medicine and supportive care physicians at UPMC Children’s Hospital of Pittsburgh.

In this episode our experts discuss:

  • Dr. Yu and Dr. Maurer’s background and path to palliative and supportive care (3:52)
  • What UPMC Children’s “full-service” palliative care program includes (7:18)
  • The bereavement component of the supportive care program (9:10)
  • The program’s increased focus on care and support outside of the hospital (11:52)
  • The paradigm shift in the way care is provided at Children’s (14:20)
  • How supportive care serves as a “glue” for patients and families (16:16)
  • Dr. Yu’s research focuses on children with medical complexity and describing how caring for a child with medical complexity affects a caregiver’s mental health (18:20)
  • The growth of the pediatric palliative and supportive care and complex care fields recently (20:09)
  • The importance of philanthropy in funding these supportive services and research that affects children all around the world (21:48)
  • Expanding supportive and palliative care services into other regions and UPMC locations (23:52)
  • The need for increased research funding in these areas and more training opportunities for pediatric palliative care physicians (28:37)
  • The most important value in a pediatric palliative care clinician (31:28)

Meet Our Guests

Justin A. Yu, MD, MSJustin A. Yu, MD, MS, is a board-certified physician-researcher in Pediatrics, Internal-Medicine, and Hospice and Palliative Care Medicine. He works with the Supportive Care team at UPMC Children’s Hospital of Pittsburgh and is an assistant professor of pediatrics at the University of Pittsburgh School of Medicine. Dr. Yu’s research focuses on improving the health and well-being of children with medical complexity and their family caregivers through pediatric palliative care interventions. He is currently conducting several observational studies which examine the association between caregivers’ experiences of their child’s care coordination and caregiver’s health-related quality of life, national trends in self-reported mental and physical health among caregivers, and levels of emotional distress among caregivers. From the work of his observational studies, he plans to develop, refine, and trial a behavioral intervention aimed at improving caregiver emotional well-being by improving their coping.

Scott Maurer, MDScott Maurer, MD, is a pediatric palliative care physician and a pediatric oncologist. Dr. Maurer is board-certified in pediatrics, pediatric hematology/oncology, and hospice and palliative. He is the chief of the division of palliative medicine and supportive care at UPMC Children’s Hospital of Pittsburgh and is an associate professor of pediatrics at the University of Pittsburgh School of Medicine. His clinical interests include symptom management and decision-making support for children with serious illness. He has published and presented on topics including pain and symptom management, development of patient reported outcome tools for children with cancer, resilience training for children with cancer, social media use in children with serious illness, the role of spirituality in the care of children, and improving doctor-patient communication. Find him on twitter at @ScottMaurerMD.

Meet Our Hosts

Allison WilliamsAllison “Alli” Williams, MD, is a pediatric hospitalist and is certified by the American Board of Pediatrics. She is a member of the Paul C. Gaffney Division of Pediatric Hospitalist Medicine, medical-surgical co-management team director, and assistant professor at the University of Pittsburgh School of Medicine. Dr. Williams received her medical degree from Herbert Wertheim College of Medicine at Florida International University in Miami, Florida, and completed her residency at UPMC Children’s Hospital of Pittsburgh. Her clinical interests include non-RSV bronchiolitis, febrile neonates, and the enhanced of patient care through medical-surgical co-management.

Sameer AgnihotriSameer Agnihotri, PhD, is director of the Brain Tumor Biology and Therapy Lab and an assistant professor at the University of Pittsburgh School of Medicine. Dr. Agnihotri earned his bachelor’s degree in biology, specializing in genetics, followed by his doctorate degree in medical biophysics, both at the University of Toronto. While there, he used genetic screens to identify novel drivers of glioblastoma, an incurable brain tumor. He subsequently completed his post-doctoral fellowship at the Arthur and Sonia Labatt Brain Tumor Research Centre at the Hospital for Sick Children, in Toronto, and the Princess Margaret Cancer Centre, Division of Neuro-oncology Research, also in Toronto. Dr. Agnihotri’s lab studies pediatric and adult high-grade gliomas.


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Voiceover: This podcast is for informational and educational purposes only. It is not medical care or advice. Clinicians should rely on their own medical judgements when advising their patients. Patients in need of medical care should consult their personal care provider. Welcome to "That's Pediatrics", where we sit down with physicians, scientists, and experts to discuss the latest discoveries and innovations in pediatric healthcare.

Dr. Allison Williams: Hi, I'm Alli Williams, one of the pediatric hospitalists here at UPMC Children's Hospital of Pittsburgh.

Dr. Sameer Agnihotri: I'm Sameer Agnihotri, assistant professor in the department of neurological surgery.

Dr. Williams: And we are so excited to host That's Pediatrics today with the wonderful Dr. Justin Yu and Dr. Scott Maurer from the division of palliative care medicine and supportive care at UPMC Children's Hospital of Pittsburgh. Thank you both for being here today.

One of the things I always like to do when we start these podcasts is just start with a simple kind of fun question. I thought as two people that have been here in Pittsburgh for quite some time, you're probably quite familiar with the Pittsburgh language, and so I was curious as to if you have a favorite Pittsburgh term.

Dr. Scott Maurer: Oh, I do.

Dr. Williams: Okay.

Dr. Agnihotri: All right.

Dr. Justin Yu: All right.

Dr. Maurer: I totally do.

Dr. Williams: Immediate.

Dr. Agnihotri: Let's start with...

Dr. Maurer: Oh my gosh. Nebby. Nebby is my favorite Pittsburgh term.

Dr. Agnihotri: Okay. You got to explain that to me.

Dr. Maurer: Oh! The thing about nebby that makes it so fantastic is that you can use it as a noun or a verb. So, nebby means that you're nosy, basically. That you're into someone else's business. You can say, "Oh, she's nebby." So, maybe it's like an adjective, right?

Dr. Williams: Right.

Dr. Maurer: Then you could use it as a verb, too. Like, "Quit nebbing."

Dr. Agnihotri: It's like a power word.

Dr. Maurer: It is. Then you can also use it as a noun where you call somebody like a nebby Debbie. "Oh, quit being a nebby Debbie." Yeah. My wife actually bought these stickers at one of the community events, and it has this really fun Pittsburgh things. She bought a nebby Debbie sticker and it's a woman looking through blinds, and it says, "Nebby Debbie always knows."

Dr. Maurer: And I have one. I have a sticker that says "Pittsburgh, left. Power move."

Dr. Agnihotri: That one I know.

Scott Maurer: Yeah.

Ally Williams: That one...

Sameer Agnihotri: I love that move. But I learned that...

Scott Maurer: So, Nebby is hands down my favorite Pittsburgh word.

Dr. Yu: I've never been able to put it together, though. A lot of the stuff you can guess where it came from, but...

Dr. Maurer: Yeah. I don't know where that came from.

Dr. Williams: No.

Dr. Maurer: I don't know.

Dr. Williams: I have no idea. Maybe it was just the Pittsburgh accent that slid through and someone said, "You what? You nebby!" And then it just stuck. Who knows?

Dr. Maurer: Yeah.

Dr. Williams: Justin, do you have a favorite?

Dr. Yu: Yeah. It's not so much a term. I actually have fully adopted dropping “to be.”

Dr. Williams: Oh, yes.

Dr. Yu: So, “a car needs washed.” Stuff like that.

Dr. Williams: Yes. The Pittsburgh grammar. It's not just the Pittsburgh language. Well, I guess not just Pittsburgh words. It's Pittsburgh language, right?

Dr. Agnihotri: “What are yinz doing?”

Dr. Williams: Oh. Yeah.

Dr. Maurer: I knew we were fully integrated into Pittsburgh when my daughter said, "Daddy, it's slippy out here."

Dr. Yu: Yeah. Slippy. Yeah.

Dr. Maurer: And I said, "No, no, no, honey. It's slippery."

Dr. Williams: Oh. See, that's that's my favorite Pittsburgh term. I love nebby.

Dr. Maurer: Slippy.

Dr. Williams: Slippy.

Dr. Maurer: Yeah.

Dr. Williams: Oh, I mean-

Dr. Maurer: Also a classic.

Dr. Williams: ... when I had a driveway that was at a 30 degree angle, I said it was quite slippy to get my car up there until we moved. So, it's one of my favorites.

Dr. Maurer: Amen, sister.

Dr. Agnihotri: Yeah.

Dr. Williams: I know that we talked a little bit about Pittsburgh language, but what I'd love to do is talk a little bit about you guys and the supportive care program as well. Can we start with learning a little bit about your background and how you came to be in Pittsburgh?

Dr. Yu: Sure. Again, my name's Justin Yu. Like we were talking before, I came here in 2012 for a med peds residency. That was a four-year program. After that, I decided to stay for a palliative care fellowship, which was two years. Then during the fellowship, kind of figured out that I wanted to pursue a more research-oriented career. So after that fellowship, essentially, I was able to stretch palliative care fellowship into four years by doing a two-year postdoc through Pitt’s CTSI. Then at the end of that, with Dr. Maurer's help here, we were able to secure some funding for me to come back over to Children's and focus my research primarily on children with medical complexity and the overlap or intersection with pediatric palliative care. So this is the start of my third year, correct? Yeah.

Dr. Maurer: Yeah.

Dr. Yu: As faculty here. I just started a K over through the CTSI. So, yeah.

Dr. Agnihotri: That's great.

Dr. Williams: That's awesome. Great.

Dr. Agnihotri: Congrats.

Dr. Williams: Congrats.

Dr. Yu: Yeah, thank you.

Dr. Maurer: Yes. We're very grateful to John and Catherine Ryan, who are the people that funded Justin 100% for the first two years that he was here. We wouldn't have Justin and all of the cool work that he's doing without them and the help of the UPMC Children's Foundation. So, we're very grateful that people in the community have decided to invest in the care of children with life-limiting and life-threatening illnesses. We're very blessed to be in a community as generous as Pittsburgh is.

Dr. Williams: Absolutely.

Dr. Maurer: Yeah. Oh, I guess I should introduce myself. I'm Scott. Scott Maurer. I am, I guess, the chief of the division of palliative medicine and supportive care at UPMC Children's. I came here in 2010, and the incomparable Carol May is the founder of the program. She brought me aboard again with help from the Children's Hospital Foundation. My job has been to help Carol build and grow the palliative care program here at UPMC Children's Hospital of Pittsburgh. I see patients. I'm involved in research. I mentor a lot of people. I help with fundraising. I'm sort do all the things, but have found a tremendous partnership with Carol. We've built something that I think is really special here because when I got here, we worked on building the clinical arm and then we worked on building the educational arm, and then in bringing Justin here, we were building the research arm of our program. So, it's really cool.

Dr. Williams: That's awesome. I feel like as a hospitalist, I live in a little bit of a bubble within the hospital, but I know that you all do so much more than just help me with the kids that are admitted in the hospital. Can you talk a little bit about the supportive care program and all of the things that you guys are able to do for our families?

Dr. Maurer: Yeah. We're a full service palliative care program, and every hospital is chosen to build a palliative care program in a different way. Carol and I were very intentional about building a program that was full service. What I mean by that is we do pain and symptom management. We do decision-making support for families that have to make a difficult decision where there isn't a right or a wrong answer. We help coordinate care. We do a lot of care coordination to help keep patients at home where they're more comfortable. We do a lot of care over the phone, over a telehealth, and making sure that all of the doctors that are involved with these children who have pretty significant medical complexity, making sure everybody's on the same page and aware of what's going on. Then for any patient that needs hospice or end of life care, we manage that directly.

We partner with all of our community hospice providers to make sure that a pediatrician from our team is taking care of these children because our community hospice providers are amazing, and they do so much and they're used to taking care of adults, so when there's a child on their service, it's very jarring for them. So, we know how to dose meds and children, and we know how to help in those situations. We've often had a long-term relationship with that family before they've ever even gotten to hospice. So, we are the doctors on call for the hospice. Whenever there's a med that needs to be written, we write it. If the need to talk to the family, we talk to the family. We're now making home visits to every patient that leaves our hospital on hospice, as long as they live within a reasonable distance. So, we do that.

Then the last component of our program is our bereavement program. We follow families for a minimum of two years after the death of their child. We have events. We have support groups. We have volunteer parents who are distantly bereaved that call our parents that are newly bereaved to give them support. If someone needs individual counseling, we have a whole packet of resources that we send them and we can direct them to individual counseling that meets their needs.

Then we also have a sibling bereavement program that works with siblings. We have a week-long summer camp where they get to cohort with other children who have suffered the death of one of their siblings. We don't plan programming there that's specifically bereavement oriented, but the kids just naturally fall into that. They want to talk about their sibling. They want to talk about what they're going through. So it's a really beautiful way. But no, there's a pirates game.

Dr. Yu: Coming up this weekend, yeah.

Dr. Maurer: This weekend [inaudible 00:10:16] are going to the pirates game with the bereaved siblings. I'm so proud of them. They've just started a teen support group, so teen siblings that are supporting other teens, which is really awesome. We've just hired a psychologist on our team-

Dr. Williams: Really? Dr. Maurer: ... who is really going to help us. Yes. Jill Majesky has joined us. We've pinched her from another hospital and brought her back home to Pittsburgh. So, she's going to be helping us with all of this programming to help with the psychosocial support of not just the patients that we're caring for here in the hospital or at home, but also for the siblings and the family members that are at home.

Some programs do some of those things, but not all of them. Some do just one thing. But we, Carol and I felt very strongly that we needed to build a complete program. When we built those clinical supports, that gave us the impetus to build an educational arm. So we've started a fellowship program. Most of the pediatric residents rotate with us. We've got medical students and chaplain students and ethics students rotating with us all the time. Then we've built the research arm of things. So, it's been an adventure. The last 12 years have been kind of a whirlwind, but...

Dr. Agnihotri: It's a whirlwind.

Dr. Maurer: But a really good and rewarding work.

Dr. Agnihotri: Can you or Justin speak a little bit to the challenges that you guys face and some of the resources that are available for the families and patients that you just talked about, but...

Dr. Yu: Yeah. This will tag onto what Scott was saying. Obviously, being a clinician here within the hospital, we're so focused on stuff that occurs within the hospital. Obviously from a medical standpoint, that is super important for children and their families when they're hospitalized. But the more and more we've gotten into this, 90-95% of their lives are spent outside the hospital. I think now that we're so firmly established, the real challenge that we're trying to address is how to support the children and their families to overcome the challenges that exist outside the hospital. Primarily, that is specifically relevant to a lack of home and community-based resources. Again, when families are here, we have comprehensive world-class care here, but then when you leave the hospital, even if you have a quote, unquote good insurance plan, there's just not a lot of services out there. So our team, along with the people at the complex care program, are slowly starting to build up a better, again, network of services that families can rely on when they're outside the hospital.

I think the main things that come to mind in terms of the actual specific challenges are a lack of any type of home care nursing support. I think what people don't understand is that most of the time, the insurance approves home care nursing for these families. It's not actually an issue in terms of insurance approving payment. It's an issue of there's no one to staff those positions. So that's a huge issue.

Then I think the other thing that Scott was mentioning in terms of care coordination, again, as clinicians, I think we get kind of pigeon-holed in terms of learning the mechanisms of how the hospital works, but how to coordinate and navigate the healthcare system as an outpatient when you're not a clinician is extremely challenging. That takes two to three years to learn the system, especially if you don't have a medical background. So, I think, in conjunction with all the other stuff we're doing over time, we're trying to simplify and find ways to make navigating that process a little bit easier.

Dr. Maurer: I think if I can piggyback on that, what Justin's talking about represents a real paradigm shift in the way that we provide care. One of the reasons I'm really proud to work at Children's Hospital of Pittsburgh is that the hospital has prioritized this paradigm shift of keeping kids in their homes, in their communities, and providing care where they are. So that's what we're all about. We know that kids with medical complexity, kids with life-limiting illness, we know that they do better at home.

The traditional model is to build a brick-and-mortar institution and build your program by bringing people to you. What the focus of this hospital is now turning to is how do we go out in the community and help those children in the community where they live? The work that Justin is doing is really shining a light on the deficiencies in local communities for resources. The challenge for us as we move forward is going to be thinking about, okay, as Children's Hospital of Pittsburgh, how do we help fill in those gaps and make sure that we can achieve this goal of meeting people, not just emotionally where they are, but physically where they are?

Dr. Williams: I was thinking about that as you were talking about it, because it's not just telehealth that's important. That's a huge part of it, and it can be helpful. But there's also that human interaction of having the person there with you, especially when it comes to the populations that you all deal with, mathematically complex life-limiting or life-threatening diseases. It's not as personable to do that through telehealth. But I did see that cool car in the garage. So, it seems like you're working at least in the Pittsburgh area of trying to get out more into the community, too, to provide support for patients that need it.

Dr. Yu: Mm-hmm. I think that the other, even from a clinical perspective, what I enjoy about working with the supportive care program so much is, to me, a way to summarize everything that Scott says that we do is I feel like we almost serve as a glue for patients and families. Being honest, when I first came here, I kind of blanched at the idea of, well, why are we called the supportive care team? Are we trying to dance around the idea that we provide hospice and palliative care services? But again, as I've worked more with the team and really taking a step back and think about what we actually do, it truly is not to just provide palliative care in terms of symptom management. It really is to find ways to support patients and families, essentially by any means necessary.

So I think what's nice is that as we get to know patients and families over time, even if we aren't going in person, and even if it's not a dedicated televideo visit or whatever like that, it can just be a quick phone call, we really serve as their continuity. Obviously, we get to know their values and their priorities over time. Again, try and just to figure out when we're trying to organize the type of services that their child requires, that's really best aligned with their goals of care.

Dr. Williams: That's so important, especially when kids become sick and end up coming to the hospital, too. I know when I'm taking care of them, I heavily rely on you and your division to talk and just say, I'm meeting this family for the first time in their time of need. You know them. How can I help them? What are their firm beliefs? How can I get on their level and what can I do to better help them make these decisions to? So, it's so great that we have that.

Dr. Agnihotri: Yep.

Dr. Williams: Justin, can you talk a little bit about your research that you've been doing because Scott alluded a little bit to it and figuring out some of our deficiencies or where we can further improve or move the program to?

Dr. Yu: Yes. My specific focus... I feel like I have two focuses. So one is just, I'd say, my research portfolio focuses on children with medical complexity at large, you know, doing various types of research basically describing the challenges that the children and the families face using a variety of different research methods. But I think right now my specific focus is actually finding ways or I'd say right now I'm describing how caregiver or family caregivers of children with medical complexity, how caring for a child with medical complexity impacts their emotional wellbeing and mental health. I think in the next three to five years, our push is going to be to, instead of just describing it, actually developing and tailoring specific interventions, more specifically psychological interventions to provide better support to improve, not just their emotional wellbeing, but their sense of thriving for these family caregivers.

Yeah. So, during my postdoc and for the first few years as a faculty member, I've really focused a lot of my research on describing the challenges that they face, again, and in the next year, I'm going to start to transition to developing an intervention.

Dr. Agnihotri: That's fantastic. In terms of, again, the research and the clinical aspect that you were talking about, you mentioned that you talked to other hospitals, are there conferences or are there associations that you guys share ideas, I could only imagine think tanks to improve or share your expertise that you've built such amazing comprehensive system here. I'm sure a lot of other hospitals would like to hear what you guys are doing here that's amazing.

Dr. Yu: Yeah. For sure. I'd say both pediatric palliative care and pediatric complex care are still pretty newer fields in a sense that they've really had kind of an established group of providers nationally, I'd say, for about 20 years. Complex care, probably even shorter. But with that said, what's nice is that there has been kind of a national growth in terms of people who are really interested in this. So from a complex care standpoint, a lot of people use pediatric academic societies as their main go-to conference. Within there, there's a special interest group of complex care where there's a lot of overlap between complex care clinicians and palliative care clinicians.

Then within the world of pediatric palliative care, yeah, I'd say our home is the broader palliative care world. So we have an annual conference, the annual assembly for the American Association of Hospice and Palliative Medicine, where pediatric palliative care clinicians make up a very large percentage now. Not only do we have our own special interest group, we have kind of our own sub community within there. Within the pediatric palliative care world, we have our own research network, and there's a lot of overlap and going back and forth between the two worlds.

Dr. Agnihotri: Scott, maybe you could highlight, as we all know in the field, this is such an important thing, but it's heavily underfunded through NIH and other things. Can you speak to foundations or other, if you had the infinite budget, where do you think you would like to see the program grow because it's...

Dr. Maurer: Yeah. Yeah. More than half of what we do is a direct result of the hardworking people at the UPMC Children's Hospital Foundation, period. Without them, we would not be where we are today. The car, the sweet ride-

Dr. Williams: The sweet ride. Yeah.

Dr. Maurer: ... we have mentioned was donated by Crebs, the local motor sales company. As we mentioned, our social worker is 100% philanthropically funded. Our bereavement program is almost completely funded through philanthropy. So, when I think about how we fit in with the foundation, I view the people that support us financially, I view them as a member of our team. So, the people who are giving so generously are just as responsible for the successes that we're having on a local level, on a regional level, on a national level, and even an international level.

A great example of this is yesterday... I'm part of a research consortium of pediatric palliative care doctors and pediatric palliative oncologists, where we developed a tool to let kids on chemotherapy self-report their own symptoms and how they're feeling on a day to day basis. Yesterday, we celebrated the 20th publication from that research group. Our ability to be involved in that was only because of the generosity of the Polumbo Foundation and the Jonathan M. Hoy Memorial fund. Because they gave to us, we have published 20 different papers, been to international conferences presenting this work, and now the tool we developed is being used by the National Cancer Institute, and it's been incorporated into children's oncology group clinical trials, which are going all over the world. So that is how people within the community of Pittsburgh help us not only hear at Children's Hospital, but they are helping children that we'll never even meet, giving them a voice in how they're being cared for and helping us listen to children when they're telling us, "I don't feel good," so that doctors like Justin and I know how to do that.

None of this is possible without the generosity of people in our community. As I said, we're super fortunate to live in a community that supports this hospital, its mission, and supports us specifically. When you're in a field, that doesn't necessarily get a great rate of reimbursement because the way insurance works in this country, there's not a huge reimbursement for the type of work that we do. Sure. Everybody agrees it's important, but nobody wants to pay for it. That makes us dependent on philanthropy to do the right thing. This hospital, this administration, and the foundation understand what the right thing is. We've had nothing but support as we've had this growth over the last two decades.

Dr. Williams: The development of all of these programs is just astounding. Like you said, it's just been a crazy ride over the past, like, 12 years, and the burst of energy that's come from this program and the support that we've had for our families. With UPMC Children's growing into the community into other hospitals, has there been any thoughts about providing some of the services we have here in those areas as well, if we're able to?

Dr. Maurer: Yes. Yeah. Yes. We've been working with our colleagues at UPMC Children's Harrisburg to make sure that they are aware of us and that they know that they can call us. If a family has a child who's dying and they want to stay in the local community, we want to keep them in their local community. We want to provide the support that's necessary for them. We gave grand rounds there and let them know we're here. We've helped a couple of children and families out there that I'll never meet, and that's okay because the right care is happening. We have colleagues at UPMC Hammit. We have colleagues at UPMC Cole, just to name a few of the places that we've reached out to and helped families in their community.

I'd like to point specifically to our perinatal palliative care program, which is run by Dr. Chris Bishop in our newborn medicine division, and also part of our division and Kate Ramey, who's the nurse practitioner there. They have created a telehealth model to help women and families who are carrying a child with a serious illness or a life-limiting illness, stay in their home communities, deliver in their home hospitals, and giving those home hospitals the ability to provide high-quality care. So the same quality of care that they could get at McGee or UPMC Children's. They can get that at UPMC Altoona. They can get that at New Horizons. They can get that at UPMC coal. Our goal is we're all one team. So, what we want to do is take care of families where they're most comfortable, where they have the social structure to navigate the most difficult time in their life.

It does this family a disservice if we only build a great program in Pittsburgh, right?

Dr. Williams: Yeah.

Dr. Agnihotri: No. [inaudible 00:27:49].

Dr. Williams: Because that's really great for Pittsburgh. But what about people living in Central PA? What about people in Southern New York or Maryland? How do we help them? So that's really the next direction. If I had unlimited funding, Carol and I, and Justin, we want to build a home care program. I want to have dedicated people who are out in the communities, providing care to children where they're at. I think the other aspect of that is integrating us throughout the hospital system so that we're involved very early and very, very often.

Dr. Yu: I would just add to that. In a world with some constraints in terms of the resources that the health system has, and also from a research perspective, in terms of where NIH money is dedicated to, I do feel like we're starting to reach an inflection point where up till now, so much focus, both on a clinical front and from a research perspective, are really focused on the fancy new things. From a science standpoint, that is really important. Obviously, a good portion of NIH money and from a clinical operations standpoint, and needs to be focused on pushing the envelope and advancing technologies.

But really, one of the studies that we did working with a national data set is looking at the size of the population of children with medical complexity. Our best guess is within the last 10 years, the national side, or the prevalence of children with medical complexity has more than doubled. So, it's gone from about 500,000 children nationally to over a million children. If you compare it with the other specific diseases or organ systems that are impacted in pediatric healthcare, and they get a lot of funding, it's just completely disproportionate. So, I think moving forward, both from a research perspective and from a clinical operations standpoint, that people or the people or the policy makers and decision makers have to find a better balance of prioritizing improving healthcare for the people right now versus always pushing the envelope forward. Obviously, again, both are really important, but I do feel like we're at an inflection point where people are like, okay, this is a population in great need, and we need to dedicate some more resources to improving healthcare delivery now.

Dr. Maurer: And we need more fellowship training programs. We need more clinicians doing this. Two years ago, the data from the American Board of Pediatrics says we only had about 350 board certified pediatric palliative care providers. We need more than that. So, again, in thinking about resources funding for fellowship programs, we opened a pediatric track last year funded by the McElhattan foundation, 100% funded by the McElhattan Foundation. They're helping us create more palliative care providers so that we can send them out into other communities and make sure that every child in this country has access to good quality palliative care.

Dr. Agnihotri: Right. And that sets up an interesting question. We talk about funding, priorities for prospective residents, fellows, medical students that are listening, nurses, social workers. What do you look for in your team? What are the qualities that you absolutely want to build this team?

Dr. Yu: Yeah. I think at the end of the day, what it really boils down to is a lot of the skills that people associate with hospice and palliative care in terms of communication and symptom management, to me, that stuff can be taught. We have a framework for teaching that. To me, I think that the most important value is just that people actually really care about the person in front of them. You're not treating a symptom. You're not treating a disease. You're treating a child and a family. To actually care about how that family is thriving is, to me, the most important value in a good palliative care clinician, that just truly be invested and willing to go the extra mile so that person can thrive.

Dr. Williams: I feel like I haven't asked any questions because I'm just listening so intently. Where can people go to find more information about the program? Is there a website? Do you have social media? Because I swear I saw pictures of the summer camp you guys were talking about on social media somewhere. I don't where, if it was with the Children's hashtag or if it was specifically you guys, but we'd love to hear more about where we could learn more.

Dr. Maurer: Yeah. So while there's chp.edu, we have a website page there. Then I'm pretty active on Twitter @ScottMaurerMD. I'm always announcing the cool things that we're doing. We need to get Dr. Yu over here on Twitter-

Dr. Yu: [inaudible 00:32:57].

Dr. Maurer: ... so that we can amplify his resource.

Dr. Yu: Yeah. I'll probably stay off that. [inaudible 00:33:01].

Dr. Maurer: God bless him. I tried for years. But then I realized what a powerful tool Twitter is to not only share our experience and what we're learning, but to actually learn about what other people are doing. My Twitter account is completely professional. I don't tweet about anything political or personal on my Twitter account. It is all sharing articles and talking about the cool things that we're doing here and learning about the cool things that other programs are doing. So, there is a presence on Twitter.

One of our physician assistants, Heather Valenti, is also super active on Twitter and talking about the advanced care provider or the advanced practice provider's role in palliative care. So I think those are the ways. Then obviously, the Children's Instagram account and Facebook and Twitter account is very good at promoting the good work that we're doing.

Dr. Yu: I should also add, otherwise [inaudible 00:34:09] will kill me, is I'm part of the palliative research center here at Pitt, which spans not just departments, but it's actually multiple schools. So, we have people from the school of nursing and the school of public health, multiple other aspects at [inaudible 00:34:24]. So we're the palliative research center or PARC. I believe it's like PARC is their Twitter hashtag.

Dr. Maurer: Yeah. P-A-R-C.

Dr. Yu: Yeah. So if anyone is really interested in getting more involved in any type of palliative care related research, again, not just only specifically related to children, but anything related to palliative care in general, they can find all the faculty members who are part of that research center and get involved in the various research projects.

Dr. Williams: That's great. Well, thank you guys both so much for taking time out of your day to describe to us all the wonderful work that your division has been doing. We look forward to seeing all of the great things and hopefully some of those future goals actually take place over the next 3 to 5 to 10 years, depending on funding and donations. Thank you all, too, for listening to That's Pediatrics today.

Dr. Agnihotri: Thank you.

Voiceover: You can find other episodes of That's Pediatrics on Apple Podcasts, Google Podcasts, Spotify and YouTube. For more information about this podcast or our guests, please visit chp.edu/thatspediatrics. If you've enjoyed this episode, please be sure to rate, review, and subscribe, to keep up with our new content. You can also email us at podcast.upmc@gmail.com with any feedback or ideas for topics you'd like our experts to cover on future episodes. Thank you again for listening to That's Pediatrics. Tune in next time.


This podcast is for informational and educational purposes only. It is not medical care or advice. Clinicians should rely on their own medical judgements when advising their patients. Patients in need of medical care should consult their personal care provider.