A team of experienced pediatricians and support staff in the Pediatric Complex Care program at Penn State Children’s Hospital collaborates to deliver advanced treatments to patients with multiple chronic illnesses, improving outcomes while helping families overcome socioeconomic and other barriers to care.
Laura Murphy, MD, a complex care physician with Penn State Children’s Hospital, greets Brinda Rizal during a recent appointment. Looking on is the 8-year-old’s mother, Basudha.
Children diagnosed with multiple serious conditions are a tiny subset of pediatric patients, but they require care that is disproportionately expensive, medically and logistically challenging, and well beyond the scope of what a single pediatrician or other specialist can provide.
General pediatrician Laura Murphy, MD, founder and section chief of the Pediatric Complex Care program at Penn State Children’s Hospital, works with general pediatrician Shawn M. Cooper, DO, and a dedicated team to provide a medical home to these patients, streamlining and optimizing their care, advocating for them in the healthcare system and the community, and easing the burden on overwhelmed parents. Both Dr. Murphy and Dr. Cooper specialize in complex care.
“A big part of our job, obviously, is to take care of the kids. But another important aspect of what we do is helping parents successfully navigate the challenges of caring for a medically complex child.”
— Laura Murphy, MD, founder and section chief, Pediatric Complex Care program, Penn State Children’s Hospital
Quarterbacking the Team
Dr. Murphy has been building the Complex Care program since coming to Penn State Children’s Hospital in 2009. It has grown to over 200 patients and became its own section in July 2018.
The program admits patients who have at least three organ systems that are severely and chronically affected and who rely on medical technology, such as a breathing or feeding tube, Dr. Murphy says.
“Our patients see many specialists, each with their own expertise, but there are aspects of their care that fall outside of a specific specialty,” Dr. Murphy says. “We fill in those gaps.”
She likens the role the program plays to quarterbacking the medical team — communicating with multiple specialists and conveying care plans and needs to family, home nursing agencies, school and other providers. Coordination of medical equipment, prescriptions and other supplies is also provided.
Either Dr. Murphy or Dr. Cooper, who is fluent in Spanish, is always on call to talk with parents, and Dr. Cooper visits the Children’s Hospital’s special needs orthopedic and neuromuscular clinics weekly. Because both physicians know every child in the program, when a parent has a concern, they can readily determine whether it is better to schedule a same-day visit in the outpatient clinic or arrange a quick phone consult or expedited follow-up with a specialist.
“Our patients have so many complex medical conditions that it is often hard for parents to guess which problem is causing their current issue. We can help them problem-solve what they need to do,” Dr. Murphy says. “We can get them the appropriate care with a specialist if needed, or we can provide care ourselves.”
If a child in the program is hospitalized, the team ensures continuity between outpatient and inpatient care. Samantha Raudensky, PA-C, under the supervision of the physicians, rounds on all their hospitalized patients daily.
“We coordinate with the inpatient teams who might not have met these kids before this hospitalization,” Dr. Murphy says. “We make sure their hospitalization and discharge plan are safe for them, based on their medical conditions and other circumstances.”
Avoiding Needless Hospitalization
Parents new to the Pediatric Complex Care program frequently remark that the uncoordinated treatment previously provided to their children often resulted in ER visits if a non-routine concern arose. That is especially unhealthy for medically complex children, in part because of the risk of healthcare-associated infections, Dr. Cooper says.
“It’s also not developmentally appropriate to have a child sitting in a hospital bed long-term,” he says. “As much as possible, we need to have these kids in their schools, in their homes and in their communities, living normal lives.”
Hospitalization is equally detrimental to a child’s family, he adds.
“It disrupts all their plans, they don’t know how long they’ll be there, and they may not know if this will be the time their loved one doesn’t come back,” Dr. Cooper says. “If we can address the little issues that can lead to hospitalization, suddenly we’ve decreased their anxiety, their depression and their sadness.”
Using the hospital as a first line of treatment also compounds the extraordinary financial burden associated with caring for medically complex children, who represent only 0.5% of all children but 30% of pediatric healthcare costs, according to Dr. Murphy.
“When these kids are in the hospital, they typically stay longer,” she says. “If we can get them home sooner or help their families avoid having to bring them to the hospital to begin with, it’s much better for them and the healthcare system, medically and financially.”
“Because the Pediatric Complex Care program is part of Penn State Children’s Hospital, when the parent of a patient has a concern, I can say, ‘I’m going to get your cardiologist on the phone’ or ‘I’m going to get your neurologist on the phone,’ and we can make a plan right away to take care of the issue.”
– Shawn M. Cooper, DO, Pediatric Complex Care program, Penn State Children’s Hospital
Comprehensive Social Support
In addition to the specialized treatment the Pediatric Complex Care team provides, it improves the lives of patients and their parents in a variety of practical ways.
That may mean securing Medicaid-funded medical day care for a 19-month-old who has undergone multiple surgeries, so her parents can return to work, or cobbling together assistance beyond what insurance provides, so a paralyzed 9-year-old can have a better wheelchair.
Meeting those needs would be impossible, according to Dr. Murphy, without nurses and care coordinators who strive to ensure families receive every benefit they qualify for. This can be anything from mobility equipment to in-home nursing. The case managers are vital to our success. Traci David, RN, Jennifer Coolbeth, RN, and Paula Cameron, RN, fill that role.
“Caring for this patient population takes a lot of time and energy — and a great deal of paperwork,” Dr. Murphy says. “These members of our team allow us to be the doctors.”
She notes a Wisconsin study that found for every hour spent face to face with a medically complex child, physicians typically spend two hours of non-reimbursable time reviewing medical records, consulting with specialists and the like.
In fact, pediatric complex care programs generally operate at a loss, Dr. Murphy points out. However, by streamlining care and averting unnecessary ER visits and hospitalizations, these programs have been shown to improve outcomes and ultimately reduce costs. More importantly, Dr. Murphy says, “It’s the right thing to do.”
Advocating for Patients
The program’s advocacy for this population extends beyond the Penn State Children’s Hospital campus. Thanks to Dr. Cooper and the generosity of a local restaurant, for example, one patient of limited means can eat for free near his home, benefiting him financially and medically.
“This child has significant difficulty eating, but he will eat a particular soft noodle dish at that restaurant,” Dr. Cooper explains. “If we can help him gain weight, his medical situation is going to improve.”
Both physicians have also met with school administrators, staff and teachers to explain patients’ medical conditions and social needs. In May, Dr. Cooper led a meeting at an elementary school on behalf of a patient who is becoming increasingly medically difficult. The boy was completing a challenging year in school, and Dr. Cooper hoped to give him a better start at a new school in the fall.
“There’s not a moment of the day when his illness isn’t causing him pain in addition to other complications, and yet he still wants to go and kick a soccer ball with the other kids and be as normal as he possibly can,” Dr. Cooper says. “So we met as a team to say, ‘How do we make that happen?’ His mother has lived in tears, and she’s so excited now. It’s worth the time. I can’t bill for it, but it’s going to change lives.”