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By Mark Tosczak
Cone Health is launching a new pediatric palliative care clinic to meet the needs of medically fragile children in Guilford County.
Most of the clinic’s services will be provided by Cone staff at Cone facilities or in patients’ homes, but that care will be coordinated with some services provided by Hospice and Palliative Care of Greensboro and home health company Advanced Home Care.
The clinic is meant, in part, to meet the needs of 21 Greensboro-area children who had received home health services through HPCGs KidsPath program.
Those services were discontinued as of Nov. 30, angering some patients’ families who felt the Guilford County hospice agency had abandoned them.
“The families were blindsided and betrayed by hospice,” said Dania Ermentrout, whose 5-year-old daughter Moira received services from KidsPath for several years. “There’s no reason any of us would pursue an ongoing relationship with them.”
Cone Health said the new clinic will provide medical services for children who often have complex, life-threatening conditions and need intensive, specialized care. It will offer three main services: pediatric palliative care, outpatient services for “medically complex” children and home-based health care services.
“Those home health services were a critical part of what made their life better, both for the child and the adult,” said Dr. Michael Cinoman, a pediatric intensive care specialist who leads Cone’s pediatric subspecialty practices.
He said the new clinic will bring together pediatric specialists, nurses and others to focus on some of the most difficult and complex patients doctors treat.
Ermentrout’s 5-year-old daughter, Moira, was born with pontocerebellar hypoplasia type 2a, a rare disorder characterized by intellectual and psychomotor delays.
She’s can’t speak, walk or do most “activities of daily living,” such as bathing or feeding herself. And she often suffers from frightening medical complications, as she did the morning of Nov. 29 — one day before her KidsPath home health services were scheduled to end. Ermentrout had already received discharge paperwork and records from HPCG.
“My assumption was I wasn’t even in the system,” she says. “It was too complicated for me to worry about while she was vomiting blood.”
Her pediatrician said he couldn’t see Moira until that afternoon and told Ermentrout to take her daughter to the emergency room . They spent 12 hours there.
It’s not the first time Moira’s parents have raced her to the ER to deal with a potential medical crisis.
“I’ve got two kids that are not medically fragile in any way,” she said. “There’s been multiple times where we’ve flown to the hospital and had to prepare them for Moira to not be coming back.”
According to the National Organization of Rare Disorders, only a few patients with Moira’s condition, Pontocerebellar hypoplasia, survive into their second or third decade of life. Ermentrout and her husband keep the numbers of doctors and nurses in their cell phones and have had local firefighters to their home to map it out in case they ever need to respond to an emergency there.
Families like hers, she says, are in a “purgatory of really caring for a seriously ill child.” Losing the KidsPath home health services has made it even tougher.
Searching for partnerships
HPCG President Kristen Yntema said the organization worked unsuccessfully for several years to try to make its home health services for medically fragile children financially sustainable.
KidsPath, which also provides bereavement counseling and other services to more than 200 children and their families, was spending about 35 percent of its annual budget on home health services for 20-some children — about $300,000 a year.
In 2014, a consultant recommended that HPCG find ways to make its pediatric home health services more sustainable. The organization has made improvements over the last three years, said Paul Russ, vice president of marketing and development at HPCG, but not enough to make the program sustainable.
“There’s significant variation across the state in what services are available to children with serious illnesses,” said Peter Barcus, executive director of Hospice & Palliative Care Center of Alamance-Caswell. His organization is one of the dozen hospice agencies, most in North Carolina, that provide services to children under the KidsPath model pioneered by HPCG.
It’s also one of just two KidsPath agencies that still provide home-based health services to pediatric patients, though some other hospice and palliative care agencies also provide such services.
Caring for children with serious, complex conditions is challenging, Barcus said, in part because there are variations in what private insurance or Medicaid may pay for those services.
“Under Medicaid they will not pay for a social worker to provide services to a child under home health care,” Barcus said. “Social work is a really integral component of the service mix that children and their families need.”
Hospice care qualifies patients for more robust reimbursements, including a social worker to help provide and coordinate additional family support services. But qualifying for hospice care requires patients to forego further curative treatments and a physician must determine that the patient is within six months of death.
For doctors treating children who have complex, sometimes rare conditions but who are still growing and developing, making that determination is difficult, Barcus said. For parents who don’t want to give up hope of helping their child, foregoing additional treatments may be unacceptable. And, Barcus says that for parents there is often a stigma attached for hospice care for children.
North Carolina’s Medicaid program does offer the Community Alternatives Program for Children, which provides additional support and care at home for children who might otherwise need to be placed in a nursing home. But not every child qualifies.
“We did a search across the nation to see how people did this kind of program, to see what we could do for ourselves at Hospice and Palliative Care of Greensboro and realized we needed partnerships,” said Yntema, who became HPCG’s new CEO in February.
Though the economics of home health care for children with serious illnesses are challenging, there’s a cost to not providing that care, too.
Ermentrout recalls one time when Moira started to exhibit “bizarre symptoms” and her heart rate soared to 250 beats a minute. They were ready to take her to the hospital, she said, when a KidsPath nurse called. “[She] was like ‘Calm down, there’s nothing you can do about it and you don’t need to go back to the hospital.’”
Sure enough, in time, Moira recovered and the family avoided another disruptive — and expensive — ER trip.
Cinoman, the pediatrician, acknowledged that home health services are likely to reduce the cost of caring for patients like Moira by reducing unnecessary hospitalizations and emergency room visits.
“Of course they’re saving dollars,” he said. But he added, for children and their families, “what we’re really talking about is improving the quality of life.”
HPCG and Cone started discussion options earlier in the fall, according to a Cone Health spokesman. In mid-November, Cone executives approved the hiring of a physician to run the new clinic.
Though the program was announced this week, it could be a month before the outpatient clinic is open and longer before Cone can provide home health services.
Although Advanced Home Care will provide some home health services, Cinoman expects Cone nurses working at the clinic will eventually provide most of those services. And he expects the clinic will serve many more patients than just the children who received KidsPath home health services.
Cinoman estimates there could as many as 200 children in Guilford County who have the kind of serious, complex illnesses the new clinic is designed to treat.
Ermentrout has been an outspoken critic of HPCG’s decisions on KidsPath home health services. She views the announcement that HPCG will partner with Cone on the new clinic as an attempt by the hospice and palliative care agency to absolve itself of responsibility for abandoning families like hers.
But she is optimistic and grateful for Cone’s involvement. She’s helped raise money for the new clinic and said she’s been asked to advise Cone on the new services. “Cone is committed to providing a solution to the needs that the kids have,” she said.