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Hospital reflects evolution of care for children

Rochester Business Journal
May 22, 2015


A pediatric neurologist, Nina Schor M.D. has chaired the Department of Pediatrics since coming to Rochester in 2006 and is pediatrician-in-chief at Golisano Children's Hospital. (Photo by Kimberly McKinzie)

Recruited from the University of Pittsburgh in 2006 to become the seventh chair of the University of Rochester Medical Center’s Department of Pediatrics, Nina Schor M.D. has been in a unique position to watch the Golisano Children’s Hospital take shape and to take a hand in directing its development.

In a matter of weeks, Schor and her staff will begin the process of orienting themselves to the new building in order to be ready to accommodate patients and their families when the hospital goes online in July.

In a wide-ranging interview with the Rochester Business Journal, Schor discussed the new children’s hospital and the evolution of pediatric care.

An edited transcript of that conversation follows:

ROCHESTER BUSINESS JOURNAL:  How long has the Golisano Children’s Hospital been in development?

NINA SCHOR M.D.: That’s not as simple a question to answer as it seems.

The idea of building a children’s tower goes back two decades or longer. For a long time we probably gave it lip service, but it served as a reminder that it was less than ideal to have pediatrics in an adult area.

In 2006, there was the PRISM project—the Pediatric Renovation Imaging Sciences Modernization project. Just as we were announcing that and getting ready for a capital campaign to fuel that (in 2008), the bottom fell out of the economy and we were faced with a dilemma: How could we go to a community that was losing jobs and losing revenue and losing purchasing power? How could we say what little you have, you have to put behind this hospital? We just didn’t feel comfortable doing that. As important as the children’s hospital was, we wanted to be fiscally and communally responsible.

So, we announced publicly to the community that we were putting this idea on hold until we felt the community could make this a priority and not have to abandon other things that were of more immediate critical need.

We waited almost three years to come out with the announcement that we were going to in fact build a children’s hospital.

RBJ: PRISM was supposed to be a $250 million plan. After the financial meltdown in 2008, the Finger Lakes Health Systems Agency got involved in a review of it and other area hospitals’ renovation plans that ended up being considerably downscaled. I believe it called for a six-story tower?

SCHOR: Right, there was going to be a tower. One of the drivers (of PRISM) was that we are also in critical need of adult beds. Every day there are 40 or 50 people admitted to the hospital who are in the hallway of the emergency department who are waiting for a bed. They’re waiting for a bed to free up.

It’s interesting. It’s so trite to say that necessity is the mother of invention, but those things become repetitive, reused phrases because they’re just so true. This is a perfect example of that.

We were a community that was strapped for jobs and funding and on the other hand, we were a hospital that was strapped for inpatient adult beds. Suddenly we realized that we could relatively less expensively put three additional floors on top of the (James P. Wilmot) Cancer Center, consolidate the care of patients with cancer and related disorders and deal with some of those admissions from the emergency room—move them out of the emergency room to those beds.

So, that was the interim solution for the adult problem. That freed us up as a pediatric enterprise to say, OK, now we don’t have to accommodate adults and to ask: So now where would we build it to make it the absolute perfect standalone children’s hospital?

I use the term standalone in a very particular way. I heard the term first at the pediatric chairs’ meeting in early March. It was a term I’d never ever heard used before. But it’s wonderful, really.

We’re not freestanding, but we’re a free-leaning children’s hospital. The notion is that it’s the best of both worlds. When you stand on Crittenden Boulevard, we look like a freestanding building.

We will be the children’s hospital. We will have a footprint that looks very much like a separate building. And yet, the back of that building connects directly into the main lobby of Strong Memorial Hospital.

The reason that’s so critically important—aside from our identity as part of the University of Rochester Medical Center, which is in fact investing $85 million in just this structure—is there are many services we provide for children that would not be cost-effective if we had to reduplicate the adult service.

The best example of that is radiation therapy. Because of the relative infrequency of cancer in the pediatric population relative to the adult population, and also because of the extreme care with which we treat cancer in children so that we don’t damage the developing nervous system or the growing bones, we use radiation therapy less frequently than adult medicine does.

Were we to create a truly standalone radiation therapy enterprise for children, we would have equipment and people that were underutilized for the cost of maintaining them. So, we share that resource with our colleagues in the Wilmot Cancer Center and that makes great sense.

Now we have the best of both worlds: separate services where it makes sense to be completely separate because we do things very differently than the adult side does or because we don’t want children waiting for long periods of time in a waiting room that is not child- and family-friendly. And we will have shared services where it makes sense to do that.

The pediatric difference
RBJ: Can you talk a little bit about what is different from adult medicine in pediatrics clinically or non-clinically?

SCHOR: The most obvious difference is in the psychosocial aspect. But maybe I’m deluding myself a little bit when I say that it is very different from adults.

It is very easy for people to understand why it is frightening and difficult for a child to come into a hospital and why it is more frightening and difficult for a parent to bring a child into the hospital than for an adult to go in for him or herself. For adults, there is an age-related expectation of needing those kinds of services. Childhood is thought to be a time when one ought to be free of concerns about critical illness or chronic disease.

It’s never been true in the history of the universe that that is the case. I only wish it were true. But it is the common wisdom that childhood is a carefree time of life. I say I may be deluding myself because I think everybody needs a pediatrician when they’re ill.

The notion that it’s good that a children’s hospital has room for a family member to stay with someone and place for a family member to become part of the medical team and inform us of what they already know about their child is true. But to pretend that it’s any different if grandma goes into the hospital and mom and dad need to know what’s going on is wrong.

Having had a parent in the hospital and knowing how little—it was not in this city, so I’m not maligning anybody locally—really knowing how little that medical team connected to my sister and me at a time when we had a parent in the hospital, what we needed was a pediatric enterprise. We were the ones who were going to deal with this medical problem.

RBJ: Why do you think that sort of disconnect between a patient’s family and attendant medical staff might exist? Does it have something to do with the way services are organized?

SCHOR: Ten or 15 years ago, we in the pediatric enterprise excluded parents. You know, parents came during visiting hours. We dumped them out and then we did our business.

RBJ: So you think it’s purely a question of culture?

SCHOR: Yes, I think it’s a cultural shift (in pediatrics) and the adult enterprise has not yet made that shift as fully as we have. I think it’s going to get there. That’s what patient- and family-centered care all around the country is about.

As a pediatric neurologist I had to do 20 months of training in adult neurology. That’s part of the way you train. A difference I saw was that on the pediatric side, no patient is ever lost to follow-up.

If you were the pediatrician and that family didn’t bring that child back for a follow-up, it was your job to get the visiting nurse service to go out and bring that child in or to very, very rarely get a court order to get that child in for treatment. On the adult side, that was never done. People were very frequently lost to follow-up.

So, the notion was that a child cannot be responsible for his or her own care. Adults have to take charge and if the parents aren’t taking charge, the medical community has to take charge.

On the adult side the notion is that the adult has to take charge of their own care. You can’t treat somebody who doesn’t themselves want to get better. That’s a fundamental philosophical difference.

RBJ: You seem to be saying that you really can’t separate the clinical from the non-clinical aspects of care.

SCHOR: I think they are part and parcel of the same thing. If you don’t treat them all at once, you don’t effect complete treatment of your patient.

I do think from a medical standpoint infectious disease is a much more frequent issue in childhood than in adulthood. Part of that is the degree to which the immune system has already been exposed to some things by the time you become an adult. Another part of that is the number of times children are in close contact in groups in our current social structure relative to adults.

For us, it becomes all the more important that we have private rooms so that we segregate children with particular infectious diseases from one another.  

Right now, especially during flu season, at 3 o’clock in the morning we’re genotyping somebody’s flu to find out if it’s OK to put them in a room with another child so that their strain is the same. We won’t have to do that when we have private rooms. We won’t have to worry that the patient in the next bed is going to give them whatever disease they came in with.

The other issue is the issue of privacy. It is a clinical issue, but it’s also goes into clinical research. We’re administering a consent form or we’re explaining a diagnosis or a procedure to a family, and we pull a curtain between the two beds in the room and pretend the other person can’t hear a word we’re saying.

We know that’s not true, but right now it’s the best we can do. In a place where there is a little bit of privacy, families will feel freer to ask questions, to bring up confounding issues, personal issues that (they) might not bring up if they remember that somebody’s on the other side of the curtain.

There’s also the potential (in non-private rooms) of others being traumatized by something that’s happening to another child in the room. In our current neonatal intensive care unit is where we see that the most. Now, it’s essentially one extraordinarily large room with tens of isolates in that room. We’re bedded right now for 60 isolates.

When something happens with any baby in that room, every family in that room thinks it’s their baby that’s having a problem. Even once they establish that their baby is OK, everything going on including resuscitations and things like that where the baby in the next bed is often visible and audible to everybody in that room is extraordinarily anxiety-provoking, to put it mildly.

Private rooms will have a calming effect, a sense of normalcy that will make it much more like having your own bedroom.

Redesigned space
RBJ: The way nursing staff will be deployed in the new hospital is really quite different, is it not? Traditionally hospital floors are organized around a central nursing station, but that setup is quite different in the new hospital?

SCHOR: It is and it isn’t. It is both a blessing and a curse that the physical plant when you have private rooms requires that nursing be closer at all times to the room where they are taking care of children. So, if a nurse needs help with something, he or she has to communicate in a different way.

We toured other places around the country and did a lot of networking with nurses and physician staff and families to really decide how we should establish the private rooms that patients and families need to feel most comfortable—without sacrificing the camaraderie and the colleagueship and the teamwork of a nursing staff, which is now going to be dispersed along a much longer corridor.

We did that in three ways:

First, when we constructed the neonatal ICU floor, we did it not as one single contiguous unit but as three color-coded pods. They actually call them neighborhoods in other places where they’ve done this. A nurse will belong to a particular neighborhood and have a much smaller unit that he or she can call upon to get help, but everybody will (also) kind of network together.

In order to make that effective, we have a station outside of every two rooms so that a nurse can sit and type into a computer. The windows are also specially constructed, angled so the nurse can see into both rooms but the patients and families in a room can’t see into the other room. 

But we also didn’t want to lose the space where nurses could congregate and talk to one another and discuss things. So we still have nursing stations, but now they will serve as a touchdown space for whatever task requires teamwork and discussion. So that’s the second thing we did.

The third thing we did depends very much upon technology. Each of our nurses, when they come in for work, they will pick up from a charging station—it looks almost like a cell phone, a smartphone, but it doesn’t work with the external cellular networks. It works only inside the hospital.

That device is programmed so that the monitors from their assigned bed spaces appear on their handheld unit.

I suspect they will spend most of their time near the babies they’re taking care of as they do now. But if they do walk away for a team activity, they’ll have no difficulty having access to information from the monitors in a room or in hearing a family is calling for them.

It’s interesting. I guess everything in life is a tradeoff. You get more space and you get more privacy, and that could mean that you get less networking unless you’re alert to it and you build in new mechanisms for networking. And that’s exactly what we did.

Geography of care
RBJ: The new children’s hospital will be a unique facility for a fairly large geographic area. Do you expect it to draw more regionally? From how far away do you expect to see patients?

SCHOR:  We don’t have an exact answer for that. There are some services we offer here in Rochester now that are not offered in Buffalo or Syracuse. The best and further-along example of that is our heart center.

There are pediatric cardiologists in Buffalo and pediatric cardiologists in Syracuse and pediatric cardiologists in Rochester. But pediatric cardiac surgery occurs here in Rochester. There are some of the less-acute surgeries done in Syracuse, but longer and more complex heart surgeries happen here in Rochester.

The reason for that is that in all of Upstate New York there really isn’t enough congenital disease surgery to keep three different surgeons completely current on techniques and busy enough to make it worth their while.

So, before I arrived here, probably five years before I came, the agreement was forged that said: We are a clinical consortium. After those children get operated on and recover, we will send them back to wherever their home cardiologist is for ongoing care, but the surgery will be focused in the midpoint, which is roughly Rochester. So, there are some services where we already get children from all over Upstate New York.

Most of the community hospitals in this region—particularly in the Southern Tier where there are a lot of small regional hospitals—have a newborn nursery because many of them have delivery rooms. An occasional one will have a special care nursery for a child who is a little bit sicker than a normal newborn but not quite critically ill. But none of them have a pediatric intensive care unit, for example.

So, if a child is in a car accident or a child who is not a newborn but an older child gets critically ill and needs to be on a respirator, they will often come here from those regional emergency rooms. They get stabilized where they are and they get transported.

We have two transport teams. We have a neonatal transport team that will go out for newborns and then we have a pediatric transport team that will take children from anywhere in this region and bring them into our hospital.

It isn’t only for critical care. Sometimes in the process of stabilization and transport a child turns a corner and doesn’t really need the intensive care unit but may need a kind of surgery that only we do. Two-thirds of the kids that get transported here go to a regular pediatric floor for something we uniquely provide.

For example, we have an orthopedist who specializes in surgery for scoliosis and uses some very, very special new techniques. Typically, what is done for these children is to put metal rods in to help straighten out the spine. As the child grew, you would have to take the rod out and put a longer one in or have an extension. So, there were multiple, multiple surgeries.

We now have a surgeon who uses a technique that’s really ingenious. It is a magnetic rod that you can lengthen from the outside with a magnet as the child grows. They come in but they don’t have to have extensive surgery each time. I don’t know that anybody else in this region is doing that right now, so kids come from all over for that surgery. 

We have the capability for doing kidney transplants for children below the age at which many of the regional hospitals feel comfortable doing that surgery. Once you get to a child who is adolescent-sized, adult transplant surgeons will often do those. But even there, some question whether that’s the right way to go.

But it’s very clear that certainly under the age of two—and some would say under five, depending on the size of the child—it becomes very difficult to do if you’re not used to working with pediatric patients.

Our (Pediatric Cleft and Craniofacial Anomalies) Center is a unique resource. We get kids from all over New York State and Pennsylvania for craniofacial reconstruction. We really benefit from the (collaboration between) the Eastman Dental Center and the craniofacial surgeons.

To be able to have a family come and have a consolidated center so they’re not making separate appointments for tooth and mouth and midface and so forth—it’s a very well-oiled machine.   

We are in the process of building a building—I would guess that it’s a couple of years away from coming online—that will house developmental and behavioral pediatrics, child neurology and child psychiatry in the same space.

These are three groups that see the same patients from different angles to help families and children deal with behavioral abnormalities, particularly with autism and related disorders. It’s an outpatient facility, and it’s a service that draws people from far away.

RBJ: So, it will be unique or unusual in offering that particular combination of services?

SCHOR: Yes. You take a family that is strapped already with a child with a chronic disorder of any kind and you say to them: You need to see this doctor, this doctor and this doctor and here’s the phone numbers. Go make five different appointments. That’s insane. And yet, we and all of our colleagues around the country are often forced to do that because we haven’t created physical spaces that allow for this kind of network interaction.

I think of us as being at the forefront of that for this region.

We actually had to talk to some groups in Canada that are at the forefront there in doing this.

Interestingly, if you were going to construct an outpatient space that was perfect for a normal child, you would make it brightly colored, brightly lit, noisy, busy. You’d put things on the wall they could play with and touch and feel that make noise. You’d put lots of other children there, and you would create exactly the opposite type of environment from what you would like for a child who is developmentally disabled or who has behavioral issues.

RBJ: You don’t want to startle them?

SCHOR: That’s exactly right. You want a calming environment. You want an environment where wayfinding is intuitive because the arrows on the floor point in a particular direction or because the elevator and the stairs are visible right from the door when you walk in. 

We only have the luxury of doing this because the Levine Foundation partnered with us and funded the initial aspects of that construction. (The William and Mildred Levine Foundation’s $1 million gift will help establish the William and Mildred Levine Autism Clinic on the third floor of the building, planned to rise this year on East River Road.)

A place for families
RBJ: I’m going to date myself with this question. When I was three I had my tonsils out and was in for an overnight stay at the Buffalo Children’s Hospital. My mother stayed with me and had to sleep in a chair. I found the bill for that a few years ago, by the way. It was $35.

SCHOR: OK, that does date you. (laughter)

RBJ: Anyway, can you talk about the accommodations Golisano Children’s Hospital will have for parents and families?

SCHOR: You don’t have to go that long ago. When my son who’s now 23 was 16 or 18 months old he had to have a short-stay surgery. It was just an overnight thing and I stayed in the room in a chair. He climbed over me to the child in the next bed.

RBJ: So, how different are the accommodations you will be making for families?

SCHOR: First of all, the rooms are more than double the size of the current double-bedded rooms. The reason for that is not just luxury. It is so that you actually have a caregiver zone that lets you do charting, which we don’t have in our current facility. We bring the computers and everything on a cart. They stay outside the room and keep walking in and out as you type things in.

There’s a caregiver zone. There’s the patient zone with not only the bed but also a bookcase they can customize, so they can put up pictures or whatever they want from home.

And then, the innermost part of the room is for a family member. There’s a bed-sized bed with a real mattress. There’s a locker and drawers where they can store things. We’re trying to make it feel as much like a bedroom as possible. The other thing is a family member can take a shower without having to go home.

And on the first floor of this new hospital there will be family space. There will be drop-in daycare for siblings. They’re calling it a clubhouse.

Most of the time the sibling is going to go up and visit their brother or sister with the parents. But there are going to be times when a physician or a social worker or a nurse says to the parents: I would like to meet with you. Why don’t we go in the conference room? The parents are not going to want to leave their younger child sitting alone in the room. So, this will be for those short periods of time when they want somebody to watch their child, and they want the child to be occupied and not just sitting by themselves. 

Because we get people from far away, there will be places for families to access information about where they can take a sibling to a movie, where can they go to dinner or to a museum. There will also be places to do a load of laundry—the amenities that make people feel at home. 

We are really very fortunate to be one of the rare hospitals in the United States that has a Ronald McDonald House within the hospital. That’s not going to change. The Ronald McDonald House won’t move at the same time as everything else, but it’s still connected.

RBJ: There is a separate one, isn’t there?

SCHOR: Yes. It’s down by the (Erie) Canal. The one in the hospital is one floor above our pediatric intensive care unit, and we tend to use for families that have a child in intensive care. That family wants to be there not in five minutes but in five seconds.

What is amazing to me is, if you ask families what were the best things about staying at the Ronald McDonald House aside from the proximity, it’s things that we think of as mundane aspects of life: being able to do a load of laundry, to heat up water for a cup of tea, to just have some sense of normalcy in a sea of what can be very foreign and very aberrant circumstances; to have a home away from home.

If a child is operated on for complex heart disease, the family isn’t going home the next day or even the next week. They’re here for months sometimes. Children who have a kidney transplant; it’s a long-haul proposition.

RBJ: How different is this from what you experienced when you first went into practice?

SCHOR: This is a whole other world.

Years ago we thought a lot about the medical aspects of a child’s care and we even thought a lot about the child from the standpoint of the condition’s psychosocial aspects. It is not new to have a playroom in a hospital or to have a play therapist come into a room and work with a child.

What is new is that we think much, much more about the family than we ever did before. Even relative to five years ago, we think of the family much more as part of the healing process and part of the education process.

It’s a partnership now, instead of a hierarchical relationship.

RBJ: So, the shift is that you’re not just accommodating the family. You’re seeing it as part of the treatment.

SCHOR: Right, and what’s interesting is that many of us are parents ourselves. It is mind-blowing to me to real-ize how long it took the medical commu-nity to realize that parents know things about their children that we could not possibly learn on our own in real time during the course of a hospitalization. To not tap into that knowledge really shortchanges what we’re able to do.

More to be done
RBJ: Given the distance pediatrics has come with that sort of shift, is there any area where you think you still could or should do more?

SCHOR: Yes, without any question. Our hospital will initially have eight floors. There is capacity to add two more floors. I probably have five floors’ worth of additional requests for what could go on those floors, but the (Federal Aviation Administration) tells me that if I build any higher, a plane will crash into it.

We all have our personal passions. For me personally as a pediatric neurologist, the biggest disconnect we have is in mental health. We have a child psychiatry unit that’s quite excellent and provides regional care for children with psychiatric and behavioral issues. We have wonderful child psychiatrists and psychologists and psychiatric nurses. They are in a different part of this hospital. They are in theory and in administration very much part of Golisano Children’s Hospital. But they’re not physically on our site.

Yes, we’re all in the same very large building. But you have to walk through an adult hallway to get to them. And the children are in the same tower with adult psychiatric admissions, which is also not where adult medical admissions are.

I understand all the practical issues of putting patients with behavioral issues in a unit. But I just think that it sends the wrong message, particularly with children. It fuels the stigma association with that.

It basically says: These children are sick and we treat them like children even though they’re sick, but these other children are crazy and we treat them like they’re crazy even though they’re children. That’s the wrong message to send.

I understand that there’s all kind of safety issues. I get it. I don’t know quite what to do at this point. But if I had my druthers, that would be the next frontier.

Perhaps we could start by funding the kind of research that would allow us to understand what the physical underpinnings of psychiatric disorders are. We only have one brain. There isn’t a psychiatric brain and a medical brain.

RBJ: Don’t you have to look at the whole field of mental and behavioral health and consider how much we don’t know, whether it’s child or adult?

SCHOR: I think that’s right. I don’t think it’s unique to pediatrics at all. I think the fear and the stigma and the isolation is not born of malice. But it’s a problem. Am I going to solve it in my lifetime? Probably not.

I always tell people: I’m a child neurologist. I hope your children never need to come to me and that’s nothing against your children. I’m here if you need me.

RBJ: So, are there particular research opportunities that would be favored by this hospital?

SCHOR: It’s important to point out at the outset that the hospital we’re building is purely an inpatient care facility. There will be no research laboratories in it. There will be no clinical research space per se.

That being said, many of our patients are on a research protocol. That’s particularly true in pediatric oncology, where almost every patient is on a national, not just local research protocol. That’s because we want to learn more about the therapies, how to improve them and how to decrease the side-effects of therapies.

So we’re not using experimental drugs or whatever. We’re collecting information on how patients respond to whatever it is we give so that we can continue to improve care.

Research like that, clinical research that grows out of the treatment of children, is always improved by having spaces to give families privacy to ask as many questions as they need to without worrying that somebody is going to judge them, spaces where there is no one in the room but the family and the caregiver.

But you also need conference space for the providers. A real luxury in this facility is that there will be a lot of space (if) a social worker or a nurse, a genetic counselor or whatever wants to sit just with a parent or with parents and grandma and grandpa without the child in the room so they can plan together how to talk to the child about a problem or talk about how to get a child to comply with a medication regimen, things of that nature, where they might want to talk privately. There will be that space available. It is in very short supply where we are now.

That’s something that, I think, is going to change the culture for the absolute better, that there are spaces in the new hospital that are what we call onstage and offstage.

All of us as providers are human just like everybody else. But we deal with emotionally charged situations all day long and there are moments where you just need to take a breather, where you just need to talk to another person who does what you do. You kind of unload on each other.

You need to complain about something, explain something, offload or whatever so you can go in refreshed and renewed to the next patient and the next situation.

In our current physical plant, that happens all too often at the nurses station within earshot of patients and families. I chastise my staff for that, but I don’t feel right about it. Where else are they going to go? There is no place that’s out of earshot of families.

There are spaces in this new hospital where people can go to have a private conversation that they need to have because they’re upset about something or they need to debrief.

We are sometimes forced to act like we’re all Superman. And I am amazed at how often my faculty and staff rise to the occasion and do act like they’re Superman. But at some point, something’s got to give.

I don’t think we have a single patient or family who doesn’t understand that when you’re taking care of a child for months and months and months and that child dies, you might need to go in a private space and deal with how it makes you feel.

I don’t think we would be as good as care providers if we didn’t feel that way. If it ever gets to so that it doesn’t get to me, that’s the day I quit. But you can’t carry it with you into the next patient’s room. That’s not fair, and that’s not good medicine.

5/22/15 (c) 2015 Rochester Business Journal. To obtain permission to reprint this article, call 585-546-8303 or email service@rbj.net.


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