There’s a point at which gaps in health care can become gaping holes for parents of children with specialized medical needs.
For Carla Thorne, that point came after a series of unsuccessful trips to a local urgent care clinic with her adoptive son Reese. Born prematurely at 24 weeks with cerebral palsy and underdeveloped lungs, Reese is susceptible to respiratory infections that can make it hard for him to get enough oxygen. “But when we’d show up at urgent care they’d see his ‘trach’ and say, ‘Oh no, we don’t do that here,’” says Thorne. So, the family would head to the ER where inevitably Reese would be hospitalized for problems that, with proper prevention and the right tools, might have been avoided or easily treated at home.
It’s not that family physicians, who might see one or two cases like Reese in a career, lack skill or compassion to care for these kids. And it’s not the fault of the emergency department staff who out of an abundance of caution end up hospitalizing these children. “It’s an organizational failure, a breakdown in the system, and an expensive and inefficient way to support these children and their families,” says University of Utah pediatrics professor Nancy Murphy, M.D., who as a rehabilitation specialist at Primary Children’s Hospital, treats hundreds of so-called “medically fragile” children a year. In 2007, she resolved to find a better way.
Her solution: a consultative medical home, or “Comprehensive Care Clinic” for the highest-cost, most medically complicated patients at Primary Children’s Hospital. Functioning as an on-call resource for families and their pediatricians, the clinic has exceeded all hopes, contributing to a sharp reduction in emergency room admissions, hospital stays and medical costs for nearly 600 kids—a total of $116 million from January 2008 to July 2014.
That’s a significant amount of money, but reduced spending is a byproduct of better care and not a goal in itself, Murphy says. At the end of the day, it’s about meeting families where they are. “For those who say, ‘Every day of life is important, regardless of quality,’ we use every modality to support that child. And for those who value time at home and being able to go to a sibling’s basketball games, we adjust care accordingly,” says Murphy, Chief of the U.’s Division of Pediatric Physical Medicine and Rehabilitation. “That’s where cost savings come. If we give these families what they want, they’ll stop having to run around looking for what they don’t have.”
Happier, healthier families are Murphy’s measure of success. “We care for the sickest kids, whose health has plateaued and likely won’t get much better. Yet their parents say their quality of life is good and they’re happy with the care they’re receiving. That’s what’s most gratifying to me.”
Health care ‘hot spotting’
Children with special health needs account for about 1 percent of the pediatric population, but more than a third of all pediatric care costs. They are what demographers call a “hot spot,” numeric proof of a breakdown in a system.
Intuitively, Murphy knew the needs of these children and their families weren’t being met. To prove it, she and her team pulled data on the most expensive patients at Primary Children’s—chronically expensive patients who drift in and out of the system, not one-off emergencies or preemies in newborn intensive care. Then she took the list and whittled it further, removing children with diseases, such as spinal bifida or cystic fibrosis, because they already have specially tailored medical programs.
What remained was a population of kids defined more by their complexity than by their diagnoses: Children who might be seeing a neurologist for seizures and a cardiologist for heart defects, and who are sustained by ventilators, feeding tubes and other special equipment. Each child averaged costs of $56,000 per year over two years. For those with developmental disabilities, the average cost was $65,000.
The families were geographically disbursed, across Utah and five surrounding states. It’s “arrogant” of us as providers, says Murphy, to expect them to haul their kids to campus half a dozen times a year. What’s more, all of their specialists were looking at them through a problem-focused lens. “No one was tying their symptoms together and seeing or treating the whole child,” she says. “These kids needed a medical home, a place to anchor their care.”
A physician champion
“Hot spotting,” or using data to identify areas of high need, a strategy first deployed to fight crime on the streets of New York City, is now widely used in health care, but with varied success. “We’ve tried several experiments, and to do this well you really need a passionate and committed physician champion, like Nancy, who is able to see past barriers to the benefits on the other side,” says Ed Clark, M.D., pediatric chair and chief medical officer at Primary Children’s.
Primary Children’s is for specialty care. Murphy knew she couldn’t do this alone. She would need to recruit a corps of physician champions willing to invest time in an experimental solution with unknown dividends. Medical homes are a proven model for holistically meeting the needs of the medically underserved, but Murphy feared her clinic would get a lukewarm reception from pediatricians in the area. “I figured they would either insist, ‘that’s our domain,’ or say, ‘sounds like a good idea but we don’t have the resources to do this,’” she says.
Whatever she devised had to be a resource, not a draw on their already constrained time. It had to be a win for primary care providers, a win for the children’s hospital, and most importantly, a win for families. It had to be a “consultative” medical home, Murphy decided.
Consultative care coordination works by filling in the gaps to support and enhance existing care models. Murphy’s Comprehensive Care Clinic was designed not to compete with primary care providers, but to serve as 24-hour, on-call resource for them and families. “We want to build a plan of care that families can take with them,” she says.
A new lifeline
Behind the scenes, it takes a fair amount of coordination of medical and billing data, provider schedules and workflows. But to patients, it just feels like better care. Here’s how it works: Now, instead of making six, 30-minute trips from Bountiful to see all of Reese’s specialists, Thorne schedules one marathon check-up with all of them at once. For the rest of the year, she works with Reese’s pediatrician who consults with case managers, social workers, nurses and medical assistants in Murphy’s clinic. “It gives me more time at home to work on his speech and occupational therapy goals,” she says.
Care is patient-driven, and aligned to each family’s health goals. “For some, it’s enough to know we’re here when they need us,” says Murphy. “These are medically sophisticated families. If you can run a ventilator in your living room, you can probably trouble shoot pneumonia.” Other families require more support. “Some of the calls we get are for non-medical needs. Maybe they need money for food or help getting their child to school,” says Gloria Wingenbach, L.C.S.W, a social worker in Murphy’s clinic. “Before our clinic, their lifeline was 911.”
Murphy is now working to adapt her model for use by other specialty groups at the children’s hospital. The biggest barrier, she says, is finding clinicians with the right temperament to be always “on call” and always available to patients. “It’s the team approach that makes this work,” she says.
There’s also the question of sustainability. Long-term success may hinge upon global changes to the current fee-for-service way of paying for health care. Because the Comprehensive Care Clinic has spared unnecessary ER visits and hospitalizations, it has meant lost revenue for Primary Children’s and its providers, most of whom are University of Utah faculty. “For every hour we spend in clinic with these families we spend an hour in indirect, non-billable time, which is being funded by the pediatrics department,” Murphy says. “But it’s worth it, and so stinking simple. We just need payment models that reward providers, instead of penalizing them, for doing what's right for patients.”
Team Reese
For her part, Thorne is just happy to have an ally, someone she can call for backup. I’ll phone the pediatrician and say, ‘His trach smells and it never smells,’ and she’ll start him on antibiotics or albuterol. Or she’ll ask if it’s more than I can handle at home,” Thorne says. “She knows Reese’s baseline, and trusts that I’ll be honest. That level of trust doesn’t happen without developing a solid relationship.”
There’s a learning curve to parenting and doctoring special-needs kids. Carla and her husband Michael had already raised four children when they agreed to foster Reese and his twin brother. “We never intended to adopt. We went into it this thinking maybe we can help some parents get right with their lives,” Thorne recalls. “We had no medical histories, no idea what we were dealing with. These babies were so tiny and sick they weren’t really expected to survive.”
Reese’s brother, Davonte didn’t survive. “He died unexpectedly at home, which is how we discovered that they had pontocerebellar hypoplasia (type 2),” Thorne says. But Reese, now 11, has exceeded everyone’s expectations, largely due to Thorne’s tireless self-education. Now they have breathing treatments and a special vest at home that shakes Reese to avoid mucus building up in his lungs. They know when the weather changes that he’ll need extra treatments. “We could have saved so much time and money if only Dr. Murphy’s clinic had existed in those early days.”
Advocating for Reese no longer feels like such an uphill battle. “I feel like I have a team and everybody cares,” Thorne says. Reese may never walk, but he participates in adaptive sports, such as skiing and biking. “He just ran his 126th road race this year,” says Thorne. And though he can’t talk, he can communicate things like, “my tummy hurts” through use of a computer and eye-gazer. “I always want him to be that person who shows that having a trach doesn’t mean you can’t function in life.”
Kirsten Stewart is a senior writer for University of Utah Health Sciences