Article
As medical advances reshape who needs hospital care, pediatric leaders must evolve care delivery around the complex, longitudinal needs of children and families.
Early in my practice as a pediatric critical care physician, most of the children I cared for in the ICU had been previously healthy. Young patients presenting with significant, ongoing medical complexity were relatively uncommon.
Today, that picture is palpably different. On a recent morning, I looked across the 28 occupied beds in a pediatric intensive care unit and counted 11 children who were technology-dependent at baseline. These are children who depend on ventilators, tracheostomies, feeding tubes, ventricular assist devices, or other technologies not just during hospitalization, but as part of everyday life. Many of their parents effectively run an ICU 24/7 at home.
It would be easy to interpret that as evidence that hospitalized children are simply becoming more medically complex, but that’s only part of the story. An important shift also is taking place in pediatric care.
Medical progress is reshaping pediatric inpatient demand in two directions. More children with previously life-limiting conditions are living longer with sophisticated, ongoing care needs, while prevention, improved treatment and the continued shift toward ambulatory care have reduced hospitalizations for some conditions that once filled pediatric units. Together, these changes are reshaping the pediatric inpatient case mix—and the operating model has not necessarily changed with it.
The forces behind this evolution include clinical successes worth celebrating. Some historically common causes of pediatric hospitalization are increasingly prevented or managed outside the ICU, while children with previously life-limiting conditions are living longer with ongoing care needs. For example, CFTR modulators have transformed care in children with cystic fibrosis, and rotavirus and respiratory syncytial virus vaccines have changed the inpatient landscape for those infections. But those changes reshape where pediatric capacity, workforce, and access are needed.
Demand can look different across care sites. Today, community hospitals are confronting pediatric units whose average daily census may only be one or two patients. At that volume, it becomes difficult to justify dedicated pediatric beds and staffing —and to sustain the pediatric-specific skills needed to maintain high-quality care. As case mix becomes more complex, these hospitals also may lack ready access to the subspecialists some children need. In contrast, a children’s hospital providing quaternary care can feel like another world. These facilities often are full, with more patients needing beds. Pediatric intensive care units are sometimes at capacity and unable to accept incoming transfers, and n some cases, patients are discharged directly from the PICU—without first transferring to an acute-care unit—because no acute-care beds are available. These scenarios require different approaches to pediatric care.
Workforce dynamics add another layer to the paradox. Low pediatric volumes can make pediatric-specific skills difficult to sustain. At major referral centers, however, increasingly complex case mix puts those same skills in greater demand—from caring for technology-dependent children to reliably establishing delicate vascular access, emergency response, and transport teams. As low-complexity pediatric admissions decline and community hospitals struggle to sustain dedicated pediatric capacity, more children with medical complexity will rely on tertiary and quaternary centers for care.
Other structural forces can intensify pressure at highly specialized centers. One example is pediatric heart transplantation. Current allocation criteria require hospitalization at the transplant center for some children seeking the highest-priority status. That requirement can contribute to longer hospital stays, with implications for families, bed capacity, and the specialized teams needed to support these children.1
The concentration of specialized care also has access implications. If community pediatric acute care capacity continues to contract, some families will have to travel farther for care. For those families, adding beds at major referral centers that are several hours away doesn't necessarily represent meaningful access to care.
For pediatric leaders, volume alone is becoming a less complete measure of pediatric demand when the composition and geographic concentration of that demand are changing at the same time. We need to understand how case mix is evolving, where demand is concentrating, and whether our pediatric care networks are designed for the patients who will depend on them next.
Clinical expertise is only part of the challenge. Highly specialized pediatric centers have built extraordinary clinical capabilities, but those capabilities often are organized as individual services rather than as one coherent system for the child and family.
Medically complex children make that disconnect particularly visible.
A patient's mother recently showed me her child's upcoming appointments in MyChart. He had 12 appointments scheduled in one month. None were on the same day, and the family lives three hours away from the providers. For a family already juggling daily caregiving and financial challenges, every additional encounter carries a logistical and tangible cost.
Fragmentation also can undermine the routine care medically complex patients still need. Families may successfully navigate numerous subspecialty appointments yet struggle to fit in basic health maintenance. A child whose underlying condition is being managed well can then land in the hospital with an illness that might have been prevented.
These are not failures of clinical expertise. They are signs of an operating model that is often organized around individual services rather than around the patient.
Multidisciplinary clinics show that children’s hospitals are already adapting. For conditions in which children need a predictable combination of specialists, bringing those disciplines together can replace multiple separate trips with a single encounter. For example, multidisciplinary clinics such as aerodigestive programs or congenital heart disease programs can bring several specialists and support services together in one extended visit, reducing travel for the patient while facilitating collaboration across the care team.
That’s meaningful progress. But putting multiple specialists in the same clinic doesn‘t automatically create an integrated care experience. A family may still spend an entire day waiting for clinicians to cycle through a room or navigate other processes built around the needs of individual services.
Children with medical complexity also challenge us to think beyond coordinating a single encounter. Much of healthcare is organized around visits, admissions, and procedures, while these patients may require interconnected care across specialties and settings for years. Their needs are longitudinal, but many of our operations remain episodic.
The opportunity now is to move beyond co-locating expertise toward orchestrating care—asking how existing specialists, technology, and services can work together efficiently around patients whose needs cross disciplines, settings, and time.
That evolution requires something health systems already talk about extensively: listening to patients and families. The difference is what happens after we listen.
Most children's hospitals have mechanisms intended to bring the patient and family perspective into organizational decision-making. Patient and family advisory councils are one common example. As I participate in these councils across the country, I hear parents offer thoughtful suggestions based on their lived experience. But too often, what comes next is an explanation of why their ideas can’t be implemented, whether it’s money, time, technology, staffing, culture, or some other constraint.
For children with medical complexity, families experience the aggregate impact of decisions that may have looked perfectly reasonable from inside individual departments but don’t account for the multiple sites, visits, or needs the child may experience. One specialty schedules follow-up appointments every three months. Another schedules every two. Laboratory work and imaging happen at different sites. Central scheduling, perhaps facilitated by artificial intelligence, optimizes each available appointment slot from the health system's perspective. Often the ability to make appointments online isn’t accessible for new patients, and central scheduling is closed on nights and weekends when families might find it easier to call. Often appointments are made without the family’s availability input. That makes the family's perspective an important test of whether care that appears coordinated organizationally actually functions as a system.
Designing around patients is more than an access or loyalty strategy; it's a quality and safety strategy, and it can carry financial implications as well. Better patient experiences can reduce complaints and claims that carry their own organizational costs. And when better coordination or safer care prevents avoidable harm and utilization, there can be an economic case alongside the clinical one. The precise financial equation will differ by organization and reimbursement model, but patient-centered operations should not be dismissed as a purely experiential investment.
Patient-centeredness should function as an operating principle.
Pediatric organizations don’t have to rebuild every care model for every diagnosis at once. Instead, look for the places where the current model most clearly isn’t working.
Bring together the clinicians who understand the care, the operational and financial experts who understand the system, and the patients and families who understand what it feels like to navigate it. Then ask a different question: If we were designing this experience around how this population’s needs are evolving, how would we build it?
Pilot something better. Measure whether it improves access, experience, outcomes, or resource use. Learn from it. Then carry those lessons to the next operational pain point.
That approach is less dramatic than attempting wholesale transformation, but it creates a path toward an operating model that evolves continuously with the patient population rather than waiting until accumulated friction makes change unavoidable.
Pediatric medicine has transformed what’s possible for children, and it will continue to do so. Now pediatric operating models must not only catch up but look to the future.
That requires thinking beyond the clinical capabilities within an individual hospital to the system that connects them. Pediatric leaders must consider where specialized capacity exists across the care network, how patients reach it, how clinicians coordinate across disciplines, and whether technology and organizational processes support families or add to their burden.
Medical complexity exposes where the design of pediatric care no longer matches the patients it serves—and where operational adaptation must come next.
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Senior Vice President
Dr. Elizabeth Mack brings over 20 years of experience in the healthcare industry, specializing in pediatric critical care, quality improvement, patient and family engagement, patient safety, and communication. Before joining Kaufman Hall, she led quality and safety at the Medical University of South Carolina Children’s Health. Dr. Mack has served as chair of the Section on Critical Care in the...
