The Children’s Hospital Kids Don’t Want To Leave With Caitlin Stella

 

Caring for your child’s health is a family ordeal and finding the right care and the right help isn’t always easy. Today’s guest is Caitlin Stella, MPH. She is the CEO of Joe DiMaggio Children’s Hospital, the pediatric hospital recognized for providing outstanding patient and family-centered care. Caitlin joins Steve Farber to share how they’ve established such a positive reputation among their patients and their families with their service and assistance. This isn’t your typical clinical care. Joe DiMaggio operates with love. Listen to learn more about what they’re doing that makes the children in their care not want to leave.

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The Children’s Hospital Kids Don’t Want To Leave With Caitlin Stella

My guest is Caitlin Stella. Caitlin is the CEO of Joe DiMaggio Children’s Hospital. You are going to learn the story of Joe DiMaggio. You are going to learn about Caitlin’s career in public health, in hospital administration, her passion for kids, and what led her to this incredible children’s hospital. The most important thing that you are going to learn is about the culture that they have created, which is based on love.

It’s not only part of their logo but it’s in the fabric of everything they do and how they take care of the kids and how they take care of the kids’ families in what is likely the most stressful times of their life. I will tee it up this way. One of the things you are going to learn is that it is not unusual for kids to cry at the hospital when they have to leave when they have to go home. Can you imagine if that’s not counterintuitive, I don’t know what is?

That’s the kind of experience that they create, where there’s such a bond with the child that when they have to go home from the hospital, they don’t want to leave. That’s a standard for the rest of us. I must say. Here she is. Caitlin Stella. We have a great conversation coming up for you. Thanks for tuning in. Enjoy.

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Caitlin Stella, welcome to the show. It’s great to see you here.

Thank you for having me, Steve. I’m happy to be here.

I want to hear about what you are doing at the hospital, but first, tell us a little bit about your personal and professional journey that brought you to this role.

I started my career in healthcare as a volunteer, if you want to go way back in time. I worked in hospitals in my hometown in Pittsburgh as a volunteer, and I loved being around the kids. I liked the pediatric component and was also 1 of 7 children. My mom’s a teacher. She taught special ed and preschool. She raised seven kids. My mom is 1 of 7, and my dad is 1 of 7. Kids ruled the roost in my family.

I loved that and decided to study Child Development in college. I studied that in Virginia, and then I decided to go to LA and try it again to graduate school at UCLA. Before I went to apply to the program, I wanted to get a residency. I started working at UCLA in the research lab, essentially. First, it was a lab, and then it was a research program. It was in about 1999 when the National Institutes for Health issued big grants for autism research. I was in an autism research group, and we wanted to put in a grant to become a center of excellence.

I was the person who orchestrated the whole grant. I was made the administrator of the program. I ran the center. It was called the Center for Autism Research & Treatment. It was a big center. We had lots of research going on in different areas like pharmacology, functional imaging, and genetics. We also had a clinic. We trained psychologists, psychiatrists, all kinds of different types of physicians, and other types of trainees like audiology, speech, and psychology.

We had a very big community advisory group that I organized because I wanted parents to help us lead where the direction of the center was in a time in autism when there weren’t a lot of resources. There weren’t a lot of things paid for by insurance and families we are trying to find answers to. UCLA was one of the few places in the country or in the world that you could go and even get a diagnosis. I felt very strongly that as we evolve the center, we should include the families.

I got involved in the autism community. We made a lot of good changes. That was a great part of my career because I did learn about what families go through when they are seeking care. I experienced it in my own family with family members that were patients, and healthcare is a difficult business or construct organization to navigate. I watched it firsthand. I went into consulting because I wanted to try to learn about the healthcare system and see how I could use my career to “fix” the healthcare system or make it easier for families.

 

I left UCLA and went to PricewaterhouseCoopers. I was a consultant for them. I worked in the National Healthcare Practice. I learned the system. I worked in about 23 different healthcare systems for several years. I learned both sides, all sides. I spent a lot of time trying to stay focused on pediatrics because I knew I wanted to go back to that. I learned about the insurance side, the pharmaceutical companies, biotech, hospitals, finance, and all the Federal programs like Medicare and Medicaid.

I decided to get off the road and went to Children’s Hospital Los Angeles full-time, where we were building a brand new hospital. That was the first time I built a hospital, and it was a great experience. I was part of a group of people that created a community network there. It’s similar themes in my career. I got recruited to go to UCLA again, and this time, at a much higher level, and the original autism center that I had helped build in 1999 reported to me when I went back. I was the CEO of Women’s and Children’s Services, so I had all of those programs. The same team was then reporting to me.

Did you meet people that were still there that worked with you before?

I had kept in touch with almost all of them. When I came back, they were so happy, and I was happy to have them with me. A lot of them have lived their whole careers doing research, especially the director of the center. He was one of the early geneticists. When we started the center, he was junior level in his career. He was just getting started. Now, he’s an international expert. He fundraises. He works with the government. He’s done a million things and is still there. We laugh that we both grew up and ended up back together again.

You started out with a research focus. In that field, a lot of times, the connotation of research is a white coat in a lab with test tubes and no direct contact with actual human beings. It wasn’t the case with your kind of research.

Within the center, we had different kinds of research happening. There were definitely white coat labs for the genetics team. For example, the person I was talking about has a real wet lab. They were doing studies like that. We also had a pharmacological lab that had animal models where they were testing some of the psychotropic drugs. We had two kinds of labs.

The one I worked on most closely was a behavioral interventional lab. Kids with emotional issues would come in, and we had studies going about things like attachment theory and whether or not there were attachment issues with the parents and what they were or could you affect change? Also, language development and all the things that are hallmarks of autism.

We had different people doing social and psychological research that were studying the behavioral aspects. Some of the kids were in more than one study. For example, autism has a high correlation with epilepsy. We had a neurologist who I’m still friends with. She’s in Boston. She studied the kids and their behavioral issues and also their epilepsy. She was using medications to see if that would help both epilepsy and autism.

There were a lot of different kinds of studies. The other one that I was very involved in was epidemiology because my background is in Public Health. My Master’s is from UCLA. I eventually went back and got it while I was working at the center. I was very focused on the prevalence in California. You are in California, and you may remember this. There were pockets of the high prevalence of autism in Silicon Valley and Silicon Beach essentially.

There was a whole study around, was there an environmental issue? Where there their pollutants in the water, land or whatever? Were there things like genetic correlations? We were trying to figure out why are the numbers of children going up exponentially in these areas. I ran the Southern California part of the state study, and I had a peer that ran the Northern California part of the state study. All of our data was put together and published. We published it in 2002.

What did you find?

Medicine doesn’t always know. Sometimes, the family knows best. Click To Tweet

It was interesting. The conclusion was essential that the DSM, which is the Diagnostic and Statistical Manual for Psych Diagnoses, had changed the criteria for Autism Spectrum Disorders. The original criteria were very strict. Kids had to have a variety of different phenotypes of how they were expressing this behavior to have an autism diagnosis.

That’s why many families were lost in those early years of my career because your child might have had 1 or 2 but not all. They couldn’t give you an autism diagnosis, and you couldn’t get services. When the spectrum became a concept, and now we all know it as the Autism Spectrum Disorders, it was the early days when they changed the definition. Many children qualified as Autism Spectrum Disorders, ASD versus autism. That’s why we were seeing these extreme numbers of kids.

There were other studies that did find things that were genetically based. I don’t remember the conclusive evidence about an environmental issue. I definitely lived through the vaccination MMR theory, which was debunked, and the person who put it out there ended up losing his license and going to jail in the UK but after doing a lot of damage to families who thought the MMR was causing autism. It set us on this course of anti-vaxxing, and look what we have been living through. That was the prime time of my career watching that happen.

That research base and then you are at your time at PwC, you started learning more of the landscape and the so-called administrative end of things. At any time when you were doing that work, did you ever have a personal vision for yourself that said, “Someday, I’m going to integrate all this stuff into one role?” Were you just pursuing what interested you at the time?

Not in a formal way. I try to counsel students, especially because I have had lots of interns over there. Try not to pigeonhole yourself. This is what you are going to end up doing. If you don’t, you are disappointed because other opportunities come up along the way. I never thought that. I do believe, and I still believe that with every opportunity that came my way, I was building onto something else. I was building up to something. I was accumulating these skills, experiences and this network of people that kept showing up in my career.

I knew I was doing the right thing because I was doing well. I was happy, growing, and interfacing with the same people that were very like-minded. If there was one thing I had as a personal mission, it was that healthcare shouldn’t be this difficult to get, understand or navigate. This is true for all family members. I have had adult issues in my family too but with a child, especially, children are not supposed to get sick.

They are supposed to be healthy and growing. When they have an issue, it makes it that much more stressful for a family and parents. When you have other children that are well, you don’t know this world I live in. Thank God. You don’t know how it is to try to get into a specialist or have to take your kids to therapy every other day and make it work with your job.

I have families who have children on ventilators and feeding tubes. If you have well children, you never live in my world but every once in a while, your kid needs something, and it is the scariest thing ever. I always felt like I was going to work my whole career to build a system that was easy and with the least amount of stress possible. That was my only mission in life, and the skills that I was going to gain, we are going to do that. That’s what I was going to do.

From the way you described your early work with autism and bringing the families into that whole dynamic it sounds obvious to a layperson but in a world where people have diseases and all that is categorized, it’s very easy to lose sight of the human element, ironically. Your awareness of the family dynamic played in early.

With children, it seems obvious because they have no other choice. Their parents have to take them to their appointments and all that but in healthcare, in general, isn’t that always true? For adults, even though you could drive yourself to a hospital or an appointment, if there is a family for that person, shouldn’t the family be part of that whole scenario right from the beginning?

 

That’s what you and I believe but not everybody functions that way. I will say medicine has evolved, even over the course of my career but there was a time in medicine, even before my time where the doctor told you what you were going to do, and that was that. This is the way you treat it. There’s a whole history of medicine where it was dictated to you, if you will. That’s what makes it strange. It’s a very weird economy where you are the recipient, you don’t decide what’s happening to you, and you don’t pay for it to a degree. The insurance and your doctor are dictating part of it. You are the recipient out of control.

It’s a weird way to think of healthcare but that is very much what it is and that’s what makes it so scary because you are in a hospital, and there are rules. There are people doing things to you, and you have no control like, “This is how we do things. We do your labs at 3:00 in the morning,” and that’s what we do. You and I find that to be very much commonsensical that the family is integral. What I learned with the autism families early on was something is so much deeper because they were advocates. They were the only ones that understood their child completely. That was lesson number one. Every kid was different.

It is a spectrum disorder, so you might be here, and I might be here. The only person that could know the nuances around each of our behavior, even if we have the same diagnosis, were our families. There were lots of parents that would tell us, “No. He can do that if you say it this way or he can do that if you approach it that way.” Some people listened, and some people didn’t. There were some people who thought they knew better. They were experts in autism. They were going to tell you. I remember that early on thinking like, “Why aren’t you listening to this mom? She knows this child better than all of us.”

It was a good lesson that medicine doesn’t always know. Sometimes the family knows best. They were also advocating for their services. When the insurance company didn’t pay for things like speech but you knew your child did well and would do well if they had speech, you had to fight for it. They advocated for the needs. They knew their children better than anybody else. They advocated at the state and the Federal levels.

That’s how the grants that I got came to be. We’ve got a grant at UCLA because our parents went to Congress. You started to realize that the people who have the most skin in the game are the ones that you want on your side. That’s why when I started the Autism Center with the team, and I was the administrator, I said to them the first thing we were going to do was have a parent advisory organization, council or committee.

I had people who said, “Do we need that? Isn’t that going to make things more complicated?” I’m like, “They are the recipients, so if we are not working in the direction of things that they need,” eventually everyone was like, “This is the way we do things at the center,” but it wasn’t commonsensical then.

It was a little out of the box at that time.

A lot of healthcare organizations have evolved past that. Patient family-centered care has taken on a whole new element within healthcare but it wasn’t always like that. We have to remember that.

It’s a bit of a tangent but out of curiosity. Are you seeing a difference in younger docs and healthcare givers coming into the world in terms of their attitude?

Absolutely and I will say, it’s not even a function of age. That’s how you are trained now. You are trained with more sensitivity and awareness of the involvement of the family, especially in pediatrics. I had a woman. She switched careers, so she became a dietician after being in marketing for many years. It’s not about age. It’s about the newer way of doing things is how do you integrate with the family? How do you involve with the family? How do you communicate with the family? That was not the way of the previous training programs. The focus was more on science, medicine, and how to give the treatment.

I don’t know if age is the right word. Maybe it’s generational. The healthcare providers that came out of that very transactional world that you were describing and very one way, I tell you. “You just do what I tell you, and the insurance company will decide whether or not that’s allowed.” That attitude shifts into, “Let’s get the family involved,” or even without family involvement it’s, “Let’s get the patient involved,” in terms of dialogue.

The people who have the most skin in the game are the ones you want on your side. Click To Tweet

I’m experiencing this. I got a new primary care doc, and he’s young. He’s in his early 30s. In my first consult with him, it was a dialogue. He said to me, “All that work that you are doing like scoping things out online and looking at the labels on your supplements, that’s helpful. That helps me to figure out what to do with you.” I thought, “I never heard a doctor say that before.”

Usually, they are like, “Why are you googling that? I will tell you what to take.”

“I’m the doctor or you can call your doctor instead of going to Google.”

It’s different now I’m telling you. It has everything to do with what residency and training programs have started to incorporate into how they function and train. I see it. What is interesting is COVID was such an experiment about what happens when you take the family away. Every hospital in the country had to narrow down visitation. In a children’s hospital, there always has to be at least one parent, caregiver or legal guardian at the bedside because you need consent and buy-in to do certain things.

In the adult world, many parts of the hospital had no visitation, especially in a COVID unit. Even if you weren’t on a ventilator, you were sick, you were completely isolated. We saw, and I’m saying “we,” the community of healthcare globally saw an increase in major safety events, quality issues, more infections, more this and that. There are theories out there. It’s not just me making it up that you didn’t have family advocates there to say, “Why are you here? Why are you doing that? Wash your hands?”

You have heavily medicated patients sometimes and without somebody at the bedside to say, and I remember when my own husband had surgery and I was like, “Wash your hands. Who are you? They just came here and gave him that.” “Sorry.” Without somebody there who knows the patient, a lot of things go wrong, and that is exactly what has happened during COVID.

I want to come back to that, but now, let’s bring you to Joe DiMaggio. What is it that brought you there and when?

It’s love, of course. Ironically, my husband is from this area but we were living in California, happy and not looking to move. Somebody who I knew who was a recruiter called me, and I had described it to her at one point in time like, “This is the kind of place that I would only leave for. I don’t think it even exists.” She called me and said, “I found it. You’ve got to check this job out.”

What were the characteristics?

This is why I thought it didn’t exist. Number one is it has to be an organization that always does the right thing for patients. That sounds like a no-brainer or common sense. You are like, “Why would that even matter?” You’ve got to remember that like every other business, sometimes healthcare makes decisions based on other needs. If you are in academic institutions, sometimes it’s about what the training program needs or whatever research. I felt that I wanted to be somewhere where the patient and patient clinical care was the most important thing and not other tangential like publishing papers or being famous for getting grants or whatever.

I’m not bad-mouthing that at all because it was a great experience and those organizations are wonderful places that innovate and develop treatments but as I get further along in my career and if I had one mission, it was about making the patient care experience easier. I wanted to be somewhere where if I felt strongly that something needed to happen for patients, then they would get behind me without a fight.

 

The other one was about payment. Children’s hospitals don’t make money, generally speaking. They have a very heavy Medicaid population because many children with chronic healthcare needs are on state Medicaid programs, and they don’t tend to pay. When you are in a system or in a place where pediatrics isn’t very profitable, it’s hard to get resources but they are also the populations that need them the most because they become your chronic population. Sometimes it stays in the health system. If you do a good job with them as kids and you get them plugged in, ultimately over time, that’s what population health is. It’s managing disease over time.

I wanted to be in a place that was going to be open to doing things that didn’t necessarily make money but was good for quality, safety, population health, and for children’s health. Ethically and culturally, it had to be about that. It sounds crazy but it’s hard to find because most children’s hospitals still have to be able to cover their costs and operations. They rely heavily on philanthropy as do we. It’s more about the organizational culture that it was going to be all about the children. The recruiter described to me the hospital and I said, “I know that place.” I’m part of the National Children’s Hospital and I know the logo.

It’s a little baseball glove with a heart in the middle. It’s the cutest logo ever. I said, “That’s the place with the clown. They have a full-time clown.” She said, “Yes. They have a full-time clown.” Again, as a Pediatric Administrator and having a full-time clown, no insurance company pays for that but every child is looking for that resource. That’s their friendly face in the hospital that’s not going to give them a shot or an IV. I was like, “How cool.”

A lot of organizations have full-time clowns of a different sort. You are talking about an actual clown.

Yes, and I will say that I knew her like that. I knew it as the hospital that employed one because no other children’s hospital that I had known employed one. There were plenty of nonprofits and organizations that came in and volunteered. They juggled and blew bubbles but this was different. I couldn’t understand it just yet but then when I got here, that’s when I started to realize what it was.

That’s when the whole experience of realizing that, “That recruiter was right. This is that place.” The clown is much more than a clown, by the way, her name is Lotsy Dotsy. She was a respiratory therapist who was taking care of children for many years and trying to get them to do their breathing exercises.

Instead of trying to get them to use a little thing where they blow in the little ball moves or whatever, she would use a harmonica. She would use balloons and get them to do breathing exercises with things that were fun for kids. Again, it seems a no-brainer. One of the kids said, “Why can’t you be Lotsy all the time? You need to be Lotsy all the time for all the kids.” She went to a clown school.

A local college had a clowning program and she learned all these techniques. She went to the CEO of Joe DiMaggio and said, “I need to be full-time support to the Child Life Program because children’s hospitals tend to have people who focus on the children’s experience but not all of my programs. This is different.” The CEO said, “Yes, of course, you should. We need to make you a full-time therapeutic clown. She has been a therapeutic clown and has been here for many years.

How long ago was that?

Talk about foresight, it was many years ago. Joe DiMaggio has officially been a children’s hospital for many years. She was a respiratory therapist working in different areas, and then she became fully dedicated to the children’s hospital. A few years later, it becomes a real children’s hospital. She has been here as long as the children’s hospital and then some.

When people ask me, “Why does Joe D have this culture? It’s because, and this isn’t the only reason but everybody that we hire has a little bit of her inside them. We are all willing to get on the floor and play. We are all willing to be there to sing happy birthday. We are all willing to be there and sing a song when they go home. It’s everybody and it’s not just her. It’s the physicians and the nurses. It’s me. It’s all of our team because we are all about the kids like she’s all about the kids and their experiences.

The culture of the organization breeds this kind of environment where everybody’s empowered to do the right thing. Click To Tweet

We want them to come here and feel comfortable and unafraid. We don’t want them to be scared to come back. We want them to think of these friends that they met. She keeps in touch with these kids. Lotsy is a symbol of Joe DiMaggio’s way of taking care of the children that we take care of in the community.

When did you join?

I came in 2018.

Did you come in as the CEO?

Yes.

You came into a place that was already built on love, from what you could tell from the logo to the clown and everything in between. Since you have been there and had direct experience of that culture, what have you been doing to evolve that even further?

My whole approach is, don’t mess with what’s working and there’s a lot that’s working. Beyond Lotsy, she’s part of a team of Child Life Specialists. As I said, a lot of children’s hospitals have them but they are there as other child developmentalist. It’s like how I trained but they are usually Master’s, most of them and are very much there to help the children cope and understand what’s happening to them. Also, explain things in a way they understand.

If you get diagnosed with cancer at age four, Child Life explains it to you differently than if you are fourteen. They will help you understand what’s going to happen to you. You are going to get a port. Try explaining a port to a three-year-old and stuff like that. We have a very large Child Life Program but when I came in, what I did was I adopted the whole department. It was Lotsy and our therapy dog. I felt like we need to take this program and crank it. That is much of what people remember here. We need to spread it even further because that makes the children’s experience positive. That’s how I look at it.

Those Child Life Specialists don’t poke, prod or give them IVs. They don’t give them medication. They don’t do things to them that they don’t want you. They are their friends. It’s like having a buddy in the hospital that’s going to help you understand what’s happening to you. You have Lotsy, who’s a familiar face. She’s there to make you smile. We have our dog who comes and visits.

What I have been doing the last few years is trying to amplify that and add to it. We have tripled the size of the team. They are everywhere in the hospital now. Some areas didn’t have one like radiology. That was a big one for me. Do you know how scary it is to get an MRI when you are four? We have to have these people in these areas where it could be traumatic. We had partial coverage here and partial coverage there because again, these are the things you don’t get paid for.

No insurance company is paying you extra to have these things but what we are doing is mitigating trauma and stress. We are giving better quality care because for example, in radiology, we track our data with a lot of other children’s hospitals. We give less sedation and less anesthesia than most of the National Children’s Hospitals because we have people there supporting the child.

 

If you want the dog in the room, the dog is in the room. If you want Lotsy to help sing you a song and you are relaxed. Someone is in there talking to you or you are watching a movie. You don’t need anesthesia, so all of our risks go down. The kids don’t have to get an ID. There’s a method to the madness. When they come in, they get toys. When they leave, they get toys.  They get phone calls beforehand and afterward from us.

Especially now, what we have been able to do with our Child Life team now that we have enough people is we call the kids ahead of time. “You are coming to visit us at Joe DiMaggio. You are going to come to have surgery. We are so excited. What’s your favorite toy? What’s your favorite color? What’s your favorite show?” By the time they get here, their room is set up. It’s like going to the Ritz Carlton or something where they know you like flowers, so they put flowers in your room or whatever. It’s the same concept, you are just that much more comfortable because there are familiar faces and comfort in the environment. That gets the ball rolling.

Every single friend you make along the way is that much more focused on your needs. That’s what I feel is the difference. It’s all about the kids in the end. There is a reason for that. Joe DiMaggio is the first children’s hospital in the world to get a certification from an organization called Planetree. I guarantee you have never heard of it but Planetree is an organization. That’s about person-centered design. The reason we were the only children’s hospital to get it is that every single thing in the children’s hospital is designed around the child and the family but more the child first but the family also.

We have parent advisors and mentors. We have youth advisors and mentors. They are involved in the decision-making and design of space. They are on quality committees. They are on strategic planning committees. They have created programs with us. They are involved, and it’s exactly my autism days. The parents were there every step of the way. They helped us to become a world-class center and it’s the same thing here. The parents and the families are here. The children are here with us every step of the way, making decisions about how we do things.

That’s why it’s so comfortable. If you call for room service, we have 24/7 room service. As long as it’s on your diet, you can have anything anytime. If you call up and you want dinosaur nuggets, star-shaped nuggets or heart-shaped nuggets, we have them. You are happy, and you will eat. You are going to be healthy, and you will get to go home. That’s the whole point. It’s making it a place they enjoy.

It’s a big leap from making a hospital experience a place they are not afraid of to a place that they enjoy. Do you still have kids coming in there who are actually excited to be there?

Absolutely and I have more kids crying on the way out because they want to stay than I have kids crying on the way out because they are traumatized. I’m telling you, when you stand at our valet and every once in a while do it just for fun, I will ask, are they upset? “Is there anything we can do? What’s going on?” The parents, moms, and babysitters want to stay. Some of them, especially the regulars, when they walk in, they’re looking for certain things. They want to see this person. They want to see that person. They want to see Miss Rosie because she draws their blood.

Miss Rosie, by the way, is known because she uses little, teeny, tiny needles that are different than the big needles. You or I want to go to Miss Rosie too. The kids know that. She sings to them. She talks them through it. She explains everything she’s doing. Sometimes she can get blood that everybody else gets out of your arm out of your finger. You will love Miss Rosie. Mom loves Miss Rosie.

We have all these little things along the way that the parents will say, “I love this place.” The kids are looking for their friends. I’m not kidding. There are more kids that are upset because they are leaving than the ones that are upset because they had a bad experience here or were scared. We like it that way. I always tell my team, “That’s a good review.”

That’s an understatement. When you compare the Joe DiMaggio experience with your typical children’s hospitals, are a lot of children’s hospitals doing similar things now? What is the difference?

The way I always describe it is it’s everywhere. It’s a cultural thing, either the culture of the organization breeds this kind of environment where everybody is empowered to do the right thing, can get on the floor and play or it’s not. It’s more formalized or it’s more academic. That’s not a bad thing but more hierarchical. In the hospital, I don’t wear suits because I looked like a suit and kids don’t like people in suits. We don’t wear white coats because kids don’t like people in white coats.

Every single person influences someone else in this building. Anybody that influences anything is a leader. So, that means everybody is a leader. Click To Tweet

There are plenty of other children’s hospitals that have beautiful buildings. They have great programs. They have great physicians and nurses and all the care team members as we do but the approach is not always the same. I have to say in all my years in consulting and being in pediatrics, I know we are different. Anybody that has been anywhere else knows we are different because we have plenty of families that come from other children’s hospitals nearby. They come to us because they have heard the experience different or they access us through our KidCierge™. This program is a service that’s there. It was my dream program. It was to make it easy for you. It was someone you could call.

I actually said to my husband, “The hospital that I go to that lets me do this is the right place for me,” because that was my mission from the beginning. “Healthcare shouldn’t be that difficult. Why is it so hard to navigate? I’m taking one day off of work. Can I have all my appointments in one day? I’m taking my kid out of school. Can I have all their appointments in one day?” It’s so hard to navigate from behind the scenes. If you don’t have an advocate on the inside doing it for you, you are at the mercy of a system that’s broken.

What is the KidCierge™?

It is amazing. What it does are a few things. If you go to our website, “Do you have a special request? Do you have a special need? Contact the KidCierge™.” It can be pretty much anything but most of the requests are things like, “I need to get an appointment with an XYZ now. I’m worried. My child is not well. I called the office, and they said the first appointment is in May.” We get some of that and then we can move them off. We can work with the teams. Find them a way to get in sooner or maybe a different location but we will get them in.

Another common one is what I said before. The kids are going to come for imaging and see genetics and neurology. It’s like, “Can’t anyone orchestrate this for me, so I only have to take one day of my life to do this?” Sometimes it’s the opposite. Sometimes we’re trying to do too much in a day and the parent will say, “He can’t handle that or she can’t handle that. Can you break the appointments up on this day and that day?” We will call the physicians or the team and say, “What do you need to happen when,” and then we’ll break it up.

It’s like with a terrible two-year-old. Good luck getting them to go see more than one specialist in a day. Sometimes it’s the parent’s request to do the opposite, in smaller bursts of time. Sometimes they are coming from out of town, so they need housing and we have free housing at Joe DiMaggio but we have to help them book the rooms. How many people? We have a hotel on campus called the Conine Clubhouse. That’s where Jeff Conine, who was a Florida Marlin, and his wife, Cindy Conine, had been fundraising for a long time for the free housing. We book that or if they have extended family coming, we help them find short-term or long-term housing.

Sometimes they have never been to Joe DiMaggio and don’t even know who to see. They contact KidCierge™ and they said, “This is the diagnosis. We will send you here. They are going to want you to do X, Y, Z.” We get all their medical records from wherever they are coming from. We get the medical records to our team. By the time the family shows up there, we already know them versus either starting from scratch. We also have a formal relationship with Boston Children’s Hospital. They are number one in the country.

Sometimes we send kids up there. If they have super rare diseases or something. The KidCierge™ orchestrates everything. The family goes up there. They see Boston, come back and the team works together through the KidCierge™ so that they are managing the patient together. It’s pretty much anything. We have had a variety of different asks coming through there. Even simple things like, “My child is scared or I’m nervous. Do you have a program?”

We have teddy bear tours so they can come in advance and they can tour with their teddy bear. We showed their teddy bear around. Sometimes the parents want to see what the room looks like. We can do things like that if there’s a request there too. The sky is the limit. It’s like if you needed a favor. If you know somebody in this market, and you are like, “I can text Caitlin. Caitlin, I know someone comes to your hospital. Can you help me?” I will say, “Sure. Let me do that. No problem.”

You have me. Some people have no one. That’s how I always felt. I was always doing things for people behind the scenes and I felt like that should be something everybody gets, not just you or donors because you know me. I don’t believe in that. Anybody who needs a special request that’s going to make the stay or situation easier, then we need to do it. That’s why we live with love.

Let me build on that. To me, through my lens, everything you said answers the question, “What should love the look in the way that we operate?” which is one of my favorite questions. It’s one that I always pose to my clients and everything else. Do you approach it overtly as love? I see it’s obviously part of your logo and all that but is this an intentional overt declaration that says, “We want to operate on the basis of love around here or you could call it that if you wanted to, but we don’t?”

 

It’s overt. It’s on everything. We even have a little special thing that we use that says, “Lead with love.” Meaning that when we onboard people, new employees and they come for orientation, I go to the new employee orientation, and so does my administrative team, and there are several things we talk about. I try to leave them with a few things. The primary things are about, “You are in a place that does the right thing for patient care always.” This goes back to like, “Why did I come here?” If you do the right thing and you are fully empowered to do the right thing, and we are always going to have your back. Don’t worry about, “I don’t know if I’m allowed to do that.”

If you are doing the right thing, we are going to back you up or help you do the right thing. Whatever that means, remember that about patient care, safety, and quality. That’s always the first priority. They start to feel like, “I’m empowered. I’m protected. If I report something or whatever.” Beyond that, I always tell them, “Every single person influences someone else in this building.” You could open a door for somebody. It’s a parent trying to get through the door with a stroller and a baby. You can either let the door slam or keep the door open. You influence their experience in the building because you choose to help or serve.

I always tell them that, “Anybody that influences anything is a leader.” That means everybody is a leader. The valet is a leader. The valets here help the kids in and out of the car. They help make sure the car seats are safe. They are in there. They help load the strollers. They are getting bags. They don’t have to do that but they do. Every single role along the way, if everybody sees themselves as a leadership keynote speaker, then they are influencing that experience every step of the way. That’s what we try to leave them with on orientation is that, “You are a leader, and here we lead with love. Here we start with, “What is the thing that I can do? What’s the thing I can choose to do now that is in the best interest of this child, this family or my team?

If you choose that and you lead with love, everything else is going to follow because that family is going to feel it. We actually have people that have said that. When I was putting this all together in my head, when I was like, “It’s on the logo. We function this way but we see it every day, everywhere.” If we use that as a reminder with the little heart on the glove, it’s a trigger everywhere that this is how we operate.

I started reading our reviews, and that’s where it hit me. If you read our patient reviews, if you read our patient satisfaction surveys that come back, if you listen to the parent testimonials and things or even unsolicited, go on Facebook and Google. The most common comment was, “That place loves my kid or we love going there. My child loves going to Joe DiMaggio.” For me, as a children’s hospital, who wants to go to a hospital?

When I start reading that regularly and then I even had a father say it to me at one point in time, “You don’t have to tell me that you love my kid. I know it. I feel it.” I was like, “That is the ultimate confirmation that everything we are doing is something that people remember how they feel,” even when things are imperfect. We have had incidences where something goes wrong, and we have to tell the family. We go, disclose and share because we are always striving for zero harm and the highest quality, patient safety, and quality but sometimes we miss.

Many times, the parents are like, “We know you love this child, and you didn’t do it to hurt them.” It’s funny that setting that whole culture, the environment, the community, that’s what it is. Even when things go wrong, they are like, “We love you anyway.” That’s what we get because we are honest and open with them. We include them. It’s very different.

There’s a quote that I always use in my keynotes from a network technician who heard me speak years ago. He’s talking about how important love is and said, “I have been telling my guys ever since I became a manager that we want our clients to love us.” They were technicians. They need to love you. Take you home to dinner and love you. Meet the wife and kids, and they love you because he said, “If the customer loves you, you could blow up their building and they will say, accidents happen.’” That’s exactly what you are describing here.

It’s very similar.

We are humans, and being human, means we are not perfect. The question is, “Where is the relationship when things don’t go according to plan?” If the love is there, you get grace in return.

We were meeting about our safety and quality program, and that is everything here. I could give you a whole other show about what we do here to keep safety at the forefront and how well we perform because of how our teams are empowered and they feel invested and all that stuff. When you were talking about medical errors when I came here again, this place was amazing, to begin with, but one thing that we could improve upon was giving people the safety and security to come forward. If you see something, say something before it becomes a problem. If there are near misses or system changes we can make, let’s do it so it never happens to anybody. Let’s get ahead of it.

You have to look at your faults if you’re going to not make the same mistake again or build a process and system to avoid it for everyone. Click To Tweet

That was this big push and shift through something that we are involved in as a National Children’s Hospital quality thing. We were looking at our data, and our incidents, and the number of reports went way up in the few years since I have been here. We have people that are not afraid to tell us when things are going wrong but the number of harmful events has gone down.

They go hand in hand because if you are telling me about these incidences where there could have been harm or there was harm and we acted, fixed the system, retrained or reeducated, in theory, you would have less harm events. We give millions of doses of scary medication every day. How that’s possible is amazing to me that over those years of making it safe.

It’s a very concrete indicator, both of those things. The higher incident reports and at first blush might even seem counterintuitive to some people but it’s not. It’s a sign of trust and love for the environment. If I trust you, I’m going to tell you. The fact that the harmful results went down is also a sign of trust because what it says is that you are listening and responding when people report.

That’s the key that the hospital act. We have made an actual change, and the staff knows, “If I report it, they are going to fix it.” It’s not for naught. It’s not a waste of my time to put this in and tell them that something is happening. They are going to help us fix it. The other thing that I wanted to do early on, we weren’t ready just yet, but they did it in the last few years, was when we look at incidents when they happen.

There was a medication error. Invite everybody. Don’t talk about it with ten people in a room, and we just talk about it amongst ourselves. No. You should tell everybody it had happened because then they are much more hyper-aware. Now what we do is we report every incident or every near-miss every day at our safety huddle. “Did anything happen overnight? Did anything happen yesterday that people need to be aware of?”

We do it at our Just Culture, where we review an incident while we invited all the staff to come to listen. Instead of five administrators behind a closed-door talking about the error you made, it’s you, your team, and everybody else who might want to sit there and go, “That could have happened to any of us.” That’s often what happens is the nurses will say, “That wasn’t my error.” We need to hear that from them.

It’s interesting this whole concept of leading with love, and we are not perfect people, and nothing is perfect but we can sure try for every kid every time for it to be zero harm, zero error, and as perfect as we can be. That has opened up this acknowledgment that we all know we are not perfect but we all care deeply. We do what we do with love and intention. It’s a safe space. For me, as a CEO to tangibly see that our staff are reporting more than ever and that we have less events, I’m like, “We are on the right track.”

How common is it for somebody to report their own error?

It’s very common.

“I screwed up. I overlooked this. I neglected to find that.” Does it happen a lot?

Yeah and sometimes we rank in them. Not rank in sense of how bad was it. It was more like, “Was their harm,” because the more harmful events go into a very different problem-solving mode. If there was a medication error that almost killed a child, we are going to handle that differently than something that was we gave her an extra Tylenol too early and but we still report. They are both the same problem. They are just different medications. For us, it’s a system issue, so they are all important. If things did not go the way they were supposed to, let’s figure out why. More often than not, it’s not human error.

 

It’s something that could have been in the system. It could have been an alert or medication check. It should have happened in the medical record. It was a communication breakdown. Sometimes it’s with the family. Sometimes it’s a language barrier and we didn’t bring a translator. I could give you days and days of examples where the system broke down. Sometimes you have errors where it’s like a Swiss cheese model where everything that could have gone wrong did go wrong.

You have to look at all of your faults if you are going to not make the same mistake again or build a process and system and avoid it for anyone. Again, we were looking at a medication issue that we found in our medical record. It didn’t have a double check on dosing for children. We have Epic, it’s a very large system.

They implemented the change across and anybody who has epic, got the new check because we caught it. We reported it. That’s the level of comfort. You are talking about people here that are very invested. That’s why for reports, we get them every day and that’s how severe they were, how much harm, and what the approach is to solve them. That’s what’s different but we want to know them all.

It seems to me that this is true for any organization but in the healthcare field, hiring the right people on a values level, you want the best possible talent, knowledge, expertise and they also have to have the right value set. Have you ever found that person, a specialist let’s say who was incredibly qualified but personally not a fit?

One hundred percent. It happens here all the time. In fact, as a health system, overall, the statistic is we hired 2% of all the people that apply because we screen them for values. Joe Maggio is particularly stringent but the way I describe it to staff is we have hired you for your heart. We can teach you what you need to know.

You are coming here with basic skills, you have the experience and we know what we can train you up to do but you either are or are not one of us. You either are or are not Lotsy. You either have some of her in you or you don’t. You are either going to hold the door open or you are not. I can’t train that into you. We try hard to screen for the people who are heart first, then head in terms of choice order of magnitude.

It seems that would be true at every level. Let’s say, for somebody who’s a valet to a surgeon. The same thing applies.

Our Health System CEO has a story he tells at every employee orientation, which was, “There was an amazing surgeon, internationally known who wanted to come and work at our health system but he was a LeBron James. He was a team of one. He wanted to be the star, and we passed because this culture is all about the team. It’s all about supporting the team. If you can’t be a team player, you are not going to do well here anyway because we do everything as a team.” That’s a typical story of everyone at all levels having a common heart or a value system.

The things, the stories that have happened here would never happen anywhere else. I will give you one quickie. There was a child in the community years ago who had a very rare disease, and we were trying to figure out what to do, it was happening and progressing quickly. One of our ICU doctors was taking care of this kid for a couple of days, and then he was supposed to go home and rest.

The new doctor comes into the ICU and this doctor says, “I’m not leaving this child. I need to see this through because this is happening so fast that if someone is not in there all the time, we are not going to give it to stay on top of it. This other doctor has to take care of other patients, so I’m going to stay with him.” The parents will never forget it to this day. The kid comes back every time he’s home from college now. He’s at Duke. He comes and visits because they will never forget that doctor who slept in his room for days.

I don’t know if you know any doctors who would do that in a hospital but he felt like, “We have to keep this kid alive. We can figure this out but I need to give him the attention.” That’s so much an indicator of what happens here versus other places. To me, that’s what love is. That’s the secret sauce. That’s the above and beyond that, you only give when it’s part of who you are. I can’t ask you. I can’t train that into you. It’s either there or it’s not.

Focus on designing the experience around what the child is going to ultimately need: support, familiarity, control. Click To Tweet

To what degree can Joe DiMaggio, your love culture, what it looks like and how it operates, that serve as an example of what’s possible in any hospital, not just the children’s hospital?

I would go back to the data. That’s what I was saying. It was remarkable to see that it can translate into the approach. Not everybody is going to have the exact same setup that we have, and not everybody is going to have a CEO like me who wants to do one of the kids all day but you can learn from our system of creating a trusting community, and quality and safety being attached to that approach. Those are things that we can train and share, those best practices. Our patient satisfaction scores are something that we often get asked about because we have two of the most prestigious patient satisfaction awards that you can get.

Even though COVID, we kept them. Even though these poor families were going through many more difficulties and we had all these restrictions, we still got 95 percentile in patient satisfaction. The other one is the Press Ganey Pinnacle of Excellence. You have to have 95 percentile for multiple years in a row without a break. People always want to know, “How did you do that?”

We cite so many different things. One is that we involve everyone. We involve the families and our teams. We try to create an environment that’s safe, comfortable, and secure for our children, our staff, their families, and the community. We focus on designing the experience around what that child is going to ultimately need. It’s the support, familiarity, and control.

The reason why they can order chicken nuggets at 2:00 in the morning is that they can. They are hungry, and if they were home, they might be able to do that. They can go to the playroom at 2:00 in the morning. It’s open. Why? It’s because if you woke up from anesthesia at 2:00 AM and you want to play, play. People can learn from our approach about why families say such good things about being here. Why do staff come and stay? It’s the same concept. It’s thinking about, “What’s going to be best for that child. What’s going to be best for the team?” Those are all principles that we live by.

Do you ever have other hospital systems come and have these conversations with you?

We do. We did a case study with Press Ganey. For our patient satisfaction, I have a whole case study on their website, and we did an interview thing. With Planetree, which is our person-centered design, there was another children’s hospital in Australia that wanted to go for it. They became the second children’s hospital in the world to get it. They came here, and they stayed with us and we gave them all of our ideas.

We definitely get looked at as a best practice and even locally. We have competition around us, and most people that have been to both places know the difference with coming here. It’s a very different vibe. As I always say, when you walk into Joe DiMaggio, you feel like someone gave you a big hug. It doesn’t show formal, doesn’t feel hierarchical, corporate, and cold. People are friendly and helpful. Something fun is going on.

We are about to take that to a whole other level because we are building four stories onto the Children’s Hospital, and the Garth Brooks Teammates for Kids Foundation helped to bring to us through a very generous donor a Child Life zone. The whole eighth floor of the hospital is going to be a movie theater, a green screen, and a sound studio that connects to all the other zones in the country and Garth. It’s a play space that’s safe like art therapy, music therapy, and classroom, so you don’t get behind in school. It takes it to a whole other level.

The heart of the hospital is the eighth floor where all this activity is happening to keep the environment light. Even if you are getting chemo pumped into your body and you have to drag around your IV pole, you might as well be playing video games, having fun, and watching a movie or playing with the green screen because it’s your universe here. You should be comfortable.

What an incredible story. I feel like I would love to see an adult hospital. One hospital to try this experiment and see if you can create something analogous for adults. I have a client that I spoke to, a healthcare system, and I spoke to a couple of thousands of their leaders. They are talking about love in their culture, and it’s important to them. I would love to see them coming hanging out with you.

 

With the adult hospital thing, I have always wondered, especially about the geriatric population. A lot of the needs developmentally are very similar. Why we have all these resources in a children’s hospital doing what they are doing is to create an environment where the children thrive. They go home. There’s less trauma. There’s a lot of support. People explaining things to you in a way you understand.

I always found that to be strange that there wouldn’t be the geriatric equivalent of that. Even the little things. We take so much care when we are going to give you an ID or draw blood from you. We have a million things do. We have different kinds of numbing creams. Our ice packs look like bumblebees or maybe you don’t like bumblebees. Maybe you like something else. Maybe you like Batman, we have Batman or whatever.

All these things, we take great care of making sure that when we draw blood for you, there’s no trauma. You see some of these older people where they keep poking them. Their veins are tiny and they are on blood thinners. You are like, “Of all populations, I never understood that. Maybe someday, I hope in my lifetime that happens.” I always tell people, “If I get sick, you take me to go to Joe DiMaggio.”

I have had that thought more than once over the last hour. Caitlin, what an incredible example, and thank you for being such a great model of what love looks like in such a tangible way. If people wanted to learn more about Joe D and about you, what’s the best way? Do you go to the website or is this some other way?

It’s JDCH.com. You can just look us up there. I’m on LinkedIn. I do a lot of posting on LinkedIn and people connect with me there all the time. We have hired people who are like, “I know who you are.” We also have our capital campaign called Catch the Love. That’s our philanthropy. That’s JDCH.com/give. On our website on the main page, there’s a link to our tour. Even if you Google JDCH or Joe DiMaggio Children’s Hospital tour, it’s for kids by kids.

You will see that when we did the tour video, I remember when I got here, they were like, “Will you be the tour guide?’ I’m like, “Who wants to see me tour? Let’s let the kids, then they will see that it’s not scary.” That’s usually most people’s introduction to the hospital. We send that to parents, and they show the kids, “This is where you are going.” You will see what it looks like or feels. It starts that ball rolling. If anyone is curious about the hospital, I always tell them to watch the tour.

Thank you so much, Caitlin, for joining me. Maybe we should do another episode. You could tell us about your safety protocols and all that. It’s fascinating.

Thank you, Steve. I appreciate the opportunity to talk and hang out.

To everybody tuning in, until next time, do what you love in the service of people who love what you do.

 

Important Links

• Joe DiMaggio Children’s Hospital
• National Institutes for Health
• Center for Autism Research & Treatment
• KidCierge™
• Conine Clubhouse
• Planetree
• Garth Brooks Teammates for Kids Foundation
• LinkedIn – Caitlin Stella, MPH
• JDCH.com/give

 

About Caitlin Stella