Vanderbilt Children’s Advances Care for Medically Complex Children

Added on Mar 16, 2017

Vanderbilt Children’s Advances Care for Medically Complex Children
By Audrey Doyle
Industry Edge March 2017

Thanks to medical and technological advancements, the survival rate for children with multisystem chronic disease has improved dramatically over the years. However, in many cases this has led to an increasing number of children with medical complexity who require a highly organized team of providers to manage their care.

Fulfilling this need at Monroe Carell Jr. Children’s Hospital at Vanderbilt is the Program for Children with Medically Complex Needs. According to Dr. David Hall, director of the program and professor of Clinical Pediatrics at Vanderbilt University School of Medicine, not only does the program significantly improve the quality of care for the Nashville facility’s medically fragile patients and their families, it also has improved utilization outcomes. Based on internal per-member, per-month data comparing utilization six months before enrollment to 18 months after enrollment, the program has reduced the hospital’s number of bed-days by 84%, admission rate by 47%, rate of readmission within seven days by 75% and emergency department visits by 55%.

“Children with severe or progressive chronic disease involving two or more organ systems have higher admission and readmission rates and longer lengths of stay than typical children, and because multiple specialists and subspecialists are involved in their care, they’re at a much greater risk for medical errors,” said Dr. Hall. “For the specialists and the families of these children, managing their care is like a constant juggling act in which one or more balls can get dropped very easily. Our program coordinates all the care these kids require by juggling all those balls so none of them gets dropped.”

A Growing Population

About 3 million children in the United States are defined as children with medical complexity, a figure that’s expected to double by 2025, according to the Pew Charitable Trusts. These children require the highest level of services and support from children’s hospitals because of the level of care and number of pediatric specialists and subspecialists required to manage their conditions. It’s not unusual, for instance, for a medically complex child to be under the care of a pulmonologist, gastroenterologist, neurologist, nephrologist, cardiologist, physical therapist and occupational therapist, among other providers.

“When so many specialists and subspecialists are involved in the care of a child, someone needs to run the show,” Dr. Hall said. “But doing that can be very challenging for the child’s primary care physician [PCP] because this much care takes a lot of time and resources to coordinate and manage. And the family usually can’t do it because they’re not medical professionals. Although specialists are willing to provide care for the organ system for their specialty, often no professional is willing or able to take accountability for the whole child.”

According to Dr. Hall, the Program for Children with Medically Complex Needs (aka the complex care program) was launched to “take ownership of care management for the sickest of the sick” of Vanderbilt Children’s patient population— kids whose conditions are so complex that no existing program can meet their needs. As he explained, the complex care team doesn’t take patients who do have a program in place for their primary disease, but instead those who do not have a central place to coordinate care and manage their multiple problems. For example, children who have leukemia or lymphoma, or a single chronic disease like diabetes or cystic fibrosis, can be managed by the hospital’s oncology, endocrinology or pulmonology program, “so we don’t take them as a rule,” Dr. Hall said. “On the other hand, many of the children in the complex care program have genetic defects, brain injuries or malformations, or severe cerebral palsy, and may be dependent on technology for survival.”

To be enrolled in the complex care program, children must have been admitted to the hospital at least twice or the ICU at least once in the previous year, plus be under the care of three or more specialists or subspecialists. “We also have a category of ‘I’ll know it when I see it.’ These are kids who are struggling for care, are bouncing back and forth between specialists and are admitted frequently,” Dr. Hall said.

Building a Successful Program

Currently 260 patients are enrolled in the program, which is structured to take a multidisciplinary approach to care coordination that’s patient- and family-centric and fosters teamwork. The team sees patients wherever they are in the hospital— the ER, ICU, or specialist units. In addition, they see patients in the hospital’s clinic approximately every three months. The program as currently structured is designed to supplement patients’ PCPs and remove some of the burden of coordination they may not be able to provide.

Besides acting as a point of contact for the family and their child’s PCP and specialists/subspecialists, the program provides several additional services, including the following:
  • Coordinating inpatient and outpatient care, including home nursing care
  • Consolidating appointments to reduce the number of separate outpatient visits
  • Interacting with insurance companies
  • Creating care plans to manage or prevent future health problems
  • Teaching families how to use medical devices such as gastronomy tubes, tracheostomy tubes and ventilators, or connecting them with services and resources that can provide that education
  • Providing or connecting families to emotional support services
  • Organizing palliative care and hospice care

The services are provided by a team that’s led by Dr. Hall and currently includes two physicians, one nurse practitioner, two nurses, a nutritionist, a pharmacist, a social worker and a program coordinator (a second nurse practitioner is expected to join the team shortly). The nutritionist, pharmacist and social worker are shared with other departments in the hospital. “The amount of time they spend with us has grown as the program has grown,” Dr. Hall said. “Even though they’re not with us on a full-time basis, because they’ve been designated to be on our team, they get to know our patients and our patients get to know them.”

This points to one of the program’s key characteristics. “We grew the program incrementally. This has enabled us to develop partnerships and build alliances with other departments and avoid alienating our specialists and primary care physicians,” Dr. Hall said.

Another key characteristic is that it’s based on three important pillars of care.

1. Continuity of care—Because medically complex children require long-term care, it’s important that they and their families establish a relationship with a team of care providers who can continue to coordinate and manage their medical needs years down the road.
“Through our program, we get to know these kids, we get a perspective on their problems and overall care needs, and we understand all the nuances of their conditions,” Dr. Hall said. “And in a teaching hospital like ours, where the attending physician might change every week and the residents can change every hour, we provide a familiar face for children and families, which builds trust. Furthermore, we’re willing to take ownership of any of the child’s problems, so they can call us if they have a problem of any kind. Families can call us even when they have a subspecialty problem. If we can’t handle it, we partner with the subspecialists to reach a solution.”

2. Shared decision making—Although the team takes ownership of care needs, it’s the families who are with their children every day and know them best. “We think it’s very important to make decisions with the families, so we educate them on what’s going on with their child and we talk together about the pros and cons of various approaches to their care,” Dr. Hall said. “This is very empowering for families and leads to the best decisions.”
It also leads to another important aspect of caring for medically complex children: goals of care. While a doctor’s goals might be to reduce the child’s blood pressure and increase the child’s oxygen saturation, for instance, the family’s goal might be simply to bring the child to the park. “We talk with families about their goals, and we work with them to achieve those goals, whatever they may be,” Dr. Hall said.

3. Care between visits—Children all over the state of Tennessee are enrolled in the complex care program, with some residing several hours away from the hospital. So the team periodically checks in with families over the phone to keep track of their child’s condition and answer any questions. They also provide ongoing communication with the child’s PCP and specialists.

A Rewarding Calling

According to Dr. Hall, the complex care program improves the care experience in many ways and at many levels of care.

For example, it improves the patient experience by preventing the child from being admitted to the hospital unnecessarily. When a child with medical complexity gets sick the family typically calls their PCP. However, because the child’s medical condition is so complex, addressing the illness while being mindful of the child’s fragile health status is often too time- and resource-intensive for the PCP, so the child is sent to the emergency room. “But the ER staff can be just as overwhelmed by all the problems the child has, so they’ll end up admitting the child,” Dr. Hall said. “We can often step in and prevent the care from unnecessarily escalating to that level by working with the PCP, the ER staff and the child’s specialists to resolve the problem and avoid a hospital stay, or, at the very least, to shorten the hospital stay.”

The program also improves the family experience. As an example, Dr. Hall detailed the case of a 7-year-old girl with severe pulmonary, gastrointestinal and neurological problems. “The mother’s entire week was taken up by doctor’s appointments, physical, occupational and speech therapy appointments, school meetings—that’s what she did every day. It was a full-time job for her,” he said. The complex care team was able to consolidate many of the appointments so they fell on the same day. They also handled some of the doctor’s visits themselves so the mother didn’t have to go to the doctor as often, and they handled some issues over the phone, freeing up the mother’s time to the point where she was able to get a part-time job outside the home.

For extremely ill children with poor prognoses, the program improves the quality of life for both the patient and their family. “We had a 5-year-old boy with holoprosencephaly and a history of repeated pneumonias,” Dr. Hall recalled. “He was so sick that whenever he showed up in the ER he was admitted to the ICU. Eventually he’d be sent home, but he’d be right back again. He was basically spending his life in the hospital.” The team and the hospital chaplain met with the family and talked about how constantly being admitted into the hospital meant the child couldn’t spend time with his siblings and his mother couldn’t spend time with her other children. “We coordinated home care for the child, and arranged for palliative care and then hospice care,” Dr. Hall said. “Although the child passed away, I view this as a success because he got to spend 18 months at home with his family instead of in the ICU.”

While Dr. Hall said that providing medically fragile patients and their families the high-quality, comprehensive, coordinated care they require is extremely rewarding for the team, it also can be challenging. For instance, it can be difficult to organize home nursing services for patients who live in rural areas. In addition, there are lots of social issues that relate indirectly to children’s health problems—examples include families who don’t have transportation or who live in an area with inconsistent cell phone coverage—and in those cases, the team needs to step in and find solutions.

However, the biggest challenge, he said, is the fact that the fee-for-service system prevalent in much of the United States doesn’t support this work. “Hospitals and providers are reimbursed by doing things to patients. In many cases, we keep things from being done to patients, and we keep them out of the hospital,” Dr. Hall said. “That takes a lot of time, and none of that time is billable.

“But everybody here realizes this is the right thing to do,” Dr. Hall continued. “So even though it’s a challenge, our leadership believes in it 100%.”

Sometime in the near future, Dr. Hall hopes to grow the complex care program by implementing telemedicine technology to conduct virtual visits with patients. This would enable the team to reach children in remote areas of the state. And for children who rely on medical equipment, it would eliminate numerous trips to the hospital via Medicaid van or ambulance. “There’s no reimbursement for telemedicine in Tennessee, but we’re still looking into it,” he said.

For now, Dr. Hall and the team will continue running the complex care program to make it easier for very sick kids to get the complicated care they require. “I have so much respect for these children and their families. This is the most gratifying thing I’ve done in my career,” he said.

“We’re sort of like the conductor of a small orchestra, where the specialists and PCPs are the instruments,” he concluded. “But instead of everyone playing a different tune, our goal is to work together to make sure every note is perfectly timed and the performance is successful.”