At 8 years old, he was a happy second grader and enthusiastic soccer player. Then, his family’s car hit a median on the highway, and the crash ejected him from the vehicle. He spent nearly 3 months in the hospital, treated for rib and lower-extremity fractures, facial and head injuries.

When his healthcare providers decided he was ready to be discharged home, his parents were understandably happy.

However, their joy was soon tempered by the realities of what was involved in transitioning him home and tending to his multiple ongoing healthcare needs.

“Given the extent of his head injuries, he became trach and G-tube dependent,” said Kristina Nazareth-Pidgeon, MD, a pediatric hospitalist and inpatient medical director of general pediatrics and complex care at Duke Children’s Hospital & Health Center, Durham, North Carolina. 

His parents had to learn how to handle medical equipment while juggling jobs, household chores, and other responsibilities. 

Children With Medical Complexity Growing in Number

The boy is one of a growing number of pediatric patients known as “children with medical complexity” or CMC.

CMC patients are defined as those who have multiple significant chronic health problems, functional limitations, and the need for high healthcare and resource use. They may also depend on some form of technology to improve or sustain their health. Patients often require multiple procedures and surgeries and are managed by highly skilled, specialized healthcare providers.

The CMC population is increasing partly due to advances in medical and surgical care. CMC patients represent less than 1% of US children but account for more than one third of total pediatric healthcare costs, according to the American Academy of Pediatrics.

In a study that tracked trends in hospital discharges, researchers found discharge rates for children with complex chronic conditions — a group that includes CMC — increased by 24.3% per 100,000 patients from 2000 to 2022.

How Best to Discharge These Patients? 

No national, one-size-fits-all guideline exists for transitioning CMC patients home. Having such a checklist would be difficult, according to clinicians and researchers, as patients’ medical needs are diverse and resources vary from location to location, with some hospitals having access to multiple specialists and others not. 

So how best to discharge these patients? Models are evolving as researchers who have surveyed hospital discharge practices pinpoint in general what works and what needs improvement. Clinicians who have learned through trial and error also offer recommendations.

Best Discharge Practices: Interdisciplinary Teams

Emily F. Moore, PhD, ARNP, director of advanced practice education and professional development at Seattle Children’s Hospital, Washington, analyzed 20 studies that looked at discharge interventions for CMC patients to identify what works best.

The analysis showed that the most effective programs:

• Aligned with the priorities of caregivers
• Trained caregivers adequately
• Coordinated community care effectively
• Included mutual decision-making, with parent involvement
• Took into account parents’ social and emotional needs

“Interdisciplinary teams are the most successful, with nurses leading,” Moore found in her review. “I would say for hospitalists, interdisciplinary is key. You need everyone involved for a successful discharge,” she told Medscape Medical News. That means nurses, hospitalists, nurse practitioners, physician assistants, social workers, and others, she said.

What else is important? She offered these tips:

• As soon as a medical need is identified, such as the need for a tracheostomy tube, start teaching caregivers.
• Be sure families know where to go in their community for help. That instruction needs to be specific, such as: “Here is the phone number for this medical supply store,” and “Here is how to get a hold of us.”
• Before discharge, schedule a conference with the pediatrician in the community so everyone is clear on the plan.
• Make sure parents are comfortable with what they need to do at home. That’s true even if the parent is a healthcare provider. Moore has a daughter with complex medical needs who requires a dozen medical specialists and a supportive husband. Even so, she said, "Every time I have taken her home from the hospital, I get home and say, ‘What am I supposed to do?’"

Best Discharge Practices: What Works? What Needs Improvement? 

In a survey of 33 hospitals and their CMC discharge practices, hospitals generally did well on ensuring timely delivery of medical equipment, arranging medication delivery, and communicating with outside providers before discharge, said study coauthor Kavita Parikh, MD, MSHS, a pediatric hospital medicine physician and research director of the Hospital Medicine Division at Children’s National Hospital in Washington, DC. 

What can be done better? Providing structured communication tools, a discharge checklist, personalized access plans, and post-discharge follow-up by the inpatient care team, Parikh said.

Best Discharge Practices: Consider Parents’ Needs

Even after effective training, parents transitioning their children home report feeling overwhelmed and uncertain of whether they are providing care correctly, said Lyndsay MacKay, PhD, MSN, assistant professor, College of Nursing, Texas A&M University, College Station. 

MacKay reviewed 32 studies that looked at discharge from hospital to home for CMC patients. Providing at-home care can be financially draining, with one parent, typically the mother, sometimes quitting their job to provide at-home care, MacKay said.

Emotional fallout is common. “Parents are grieving the losses of having typical parenthood experiences,” MacKay said. “On top of that, we are asking them to be a parent as well as a care provider.”

Isolation is often an issue, with everyday routines, such as story time, sports, or playdates, not possible. Ideally, she said, hospitals should have a clinic devoted to CMC patients to manage discharge and the needs of parents and patients effectively. 

Best Discharge Practices: Clinicians Weigh In

Once discharged, a CMC patient’s primary care provider (PCP) often serves as the point person, but not always, as Nazareth-Pidgeon found when her team was discharging the 8-year-old patient injured in a motor vehicle accident. “His PCP was not comfortable taking care of a patient with that level of [needed] care,” she said. 

So, she turned to the list of PCPs identified as comfortable caring for children with those needs. To provide more support, “we give our pager number for questions,” Nazareth-Pidgeon said.

Other measures that help, explained Nazareth-Pidgeon, include:

• Parents are watched over as they change a tracheostomy tube three times before discharge, to gain confidence. They also watch a CPR video.
• Once home, patients are followed by an outpatient complex care team. The team includes a nurse assigned to follow through on the patient’s progress. He or she knows the patient’s story “inside and out,” which is an advantage.
• A patient navigator helps parents schedule and reschedule appointments, keeping in mind parents’ other responsibilities. “They might come to Duke one day, but have five appointments,” Nazareth-Pidgeon said.

“I think the key is to use all the resources at your disposal,” said David L. Hill, MD, a pediatric hospitalist in Seattle, Washington, and spokesperson for the American Academy of Pediatrics. “Many hospitals have care coordinators on staff.” Get to know them, he said. 

“They know what the resources [in the community] are, they understand the rules, they know how to get things done,” he added.

A predischarge home visit can be especially valuable, he said. For instance, does the home have enough outlets to manage the electrical needs of the medical equipment? “The better you can understand the home environment, the more likely discharge will be successful,” Hill said.

Nazareth-Pidgeon, Moore, Hill, MacKay, and Parikh have reported no relevant disclosures. MacKay’s study was supported by the O'Brien Institute for Public Health; the Department of Pediatrics, University of Calgary; and the Alberta Children's Hospital Research Institute. Moore and Parikh have reported no external funding.