When a baby is admitted to the neonatal intensive care unit (NICU) at Children’s of Alabama, a special team of nurses has already begun planning the care required to send them home. Called care coordinators, their job is to ensure everything is in place for a positive outcome after discharge. “The doctor, bedside nurses and nurse practitioners are mainly focused on acute care of the patient,” said NICU Medical Director Carl H. Coghill, M.D., who, together with Children’s nursing administration, helped developed the discharge program when he became medical director in 1998. “The coordinators are focused on the long-term. They are the ones that see a patient from start to finish.”
“They are a face parents learn to know and trust,” he said.
From routine immunizations, retinopathy of prematurity screenings, hearing evaluations and other newborn screenings, the discharge planners oversee the health maintenance of these tiny patients. They also round with the medical team every day to stay abreast of the most current plan for the baby, then incorporate that information into the discharge planning.
“As medicine has evolved, more preemies are, thankfully, surviving,” said Brenda Voulgarides, RN, who helped shape the position as the first care coordinator 20 years ago. “But they often go home with complex medical needs.” For instance, she still remembers the first time a patient was discharged with a gastrostomy tube or tracheostomy.
Today, as discharge nears, the team ensures that all pending consults, studies and lab work are followed; work to ensure that all consulting teams agree to the final treatment plan; and arrange all outpatient follow-up. They also provide individual education to the families on the baby’s care, including instruction on all equipment and medications. An important part of this is ensuring that parents learn how to be their child’s advocate and know when and who to call for help. After discharge, they provide the baby’s outpatient pediatrician with a comprehensive overview of the hospital course, medications, and plans to facilitate care transition.
The complexity of the patients means that the care coordinators have to be adept at working through many barriers during the education process. For instance, Voulgarides once taught a blind mother how to administer her baby’s medications and care for the infant’s tracheostomy.
The challenges of the babies mean that “the parents have to really understand their child’s diagnosis, reasons for the medicines and need for all of the follow-up,” said care coordinator Andrea Walding,RN. And that takes time. “It can’t be done over two days.”
The care coordinators also work to ensure that the baby’s team of physicians all agree on the discharge plans, said Voulgarides, so when the babies are seen in the outpatient clinic, “everyone’s philosophy aligns” and there are no major changes that require significant re-education of the parent or doubt about their prior care.
Coghill knows how important the coordinators are. “Often, parent satisfaction with the NICU has more to do with the care coordinators than with the doctors and bedside nurses,” he said.