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Pediatric Palliative Care

Beyond the Diagnosis: VNH’s team of experts provides pediatric palliative care to children and their families.

VNH’s Pediatric RN Lily Burke began the meeting with the first child’s name. She and a group of pediatric palliative care experts discussed his degenerative condition and possible ways to help him. “I’m trying to get him a pool pass,” she told the others. “That would help keep him moving.” The conversation turned then to the family’s condition. “Mom is struggling right now,” Burke commented. “She could really use a friend.”

As the largest provider of Pediatric Palliative Care (PPC) in Vermont*, VNH is looking out for its youngest and smallest patients. Since the program’s inception in late 2012, 17 children with chronic, complex health needs – and their families – have received care at home from VNH’s multidisciplinary team of pediatric palliative care experts.

“VNH, under the direction of Hospice Director Chuck Crush, has done an exceptional job in implementing the program,” said Monica Ogelby, case manager for the Vermont Medicaid Pediatric Palliative Care Program. “It was the first agency to implement regular, ongoing, multidisciplinary team meetings – which is a critical element in making this program work.”

 

A Full Staff of Experts

In addition to case managers like Burke, VNH’s PPC team includes medical social workers, a full staff of expressive therapists, and child life specialists. Medical social workers help families deal with loss issues – everything from loss of life to lost hopes and dreams for a child with disabilities. VNH’s expressive therapists use music or art as creative outlets for patients. Child life specialists offer what Crush calls “play therapy with a specific goal,” to help the patient and the entire family normalize the illness in their home. An example might be to show not just the patient how to use an oxygen mask, but to show her parents and brothers and sisters, too.

Burke’s idea for the pool pass was not an anomaly. VNH’s team is dogged in its commitment to help these children, and solutions for care very often go way beyond the clinical. “We are known as the ones that ‘make things happen,’” Crush said. He remembered one child that loved music, and his expressive therapist wanted him to try GarageBand, a software program that allows users to create music or podcasts. The child would need an ipad to download the program. Through a series of phone calls and conversations, the ipad was donated by a local company. “We try to meet kids and parents where they are, and give them what they need,” he said.

“Chuck’s hospice background has lent itself beautifully to the program leadership, because he recognizes the value of wrap-around supportive services, and has continued to think creatively about how to help this program grow, improve, and flourish,” Ogelby added. “The team did not hesitate to contract with the necessary providers in order to provide the services unique to this program (such as child life services).”

 

A Friendly Face. A Helping Hand

As case manager, Burke provides clinical services, but also is care coordinator for the family. That can mean helping parents navigate the often-confusing maze of medical terminology, specialists, and medications they are thrust into upon learning their child’s diagnosis. Care coordination can also mean helping the family interface with other aspects of life, such as talking with school staff about the child’s care and needs, in order to keep life as normal as possible and optimize their quality of life.

As the PPC program continues to grow, Crush has turned his focus to New Hampshire, which does not currently have a state-wide PPC program. VNH provides care for more than 40 communities in the Granite State that are home to many children in need of these services. “I’ve started to receive calls from pediatricians in New Hampshire,” he said. “We’ll find a way to help them.”

“I’ve been so impressed with how VNH has started to collaborate with health care providers to support the development for a similar program in New Hampshire,” Ogelby said. “I think it’s remarkable that the team has seen the value in what we’ve been doing in Vermont, and wants to support its N.H. neighbors in doing something similar.”

*According to Vermont Medicaid PPC data, VNH covers three counties in Vermont and therefore has the largest territory of any Visiting Nurse Agency.