Hospice and Palliative Care of Greensboro has announced that it will drop pediatric home-care services to 19 families of terminally ill children.
The parents of 19 terminally ill and medically fragile children are receiving the harsh news this week that they’ll be dropped by Hospice and Palliative Care of Greensboro at the end of the month.
Kristen Yntema, the nonprofit’s president and CEO, informed medical providers and referral partners of the decision to discontinue the pediatric home-health services program in a letter on Nov. 10, and the agency issued a public statement confirming the decision on Monday.
Dara LaJoie, whose 4-year-old son Emilio suffers from a rare genetic disease, absorbed the news on Monday evening while visiting her friend, Dania Ermentrout, at her home in Greensboro’s Hamilton Lakes neighborhood. Ermentrout’s 5-year-old daughter, Moira, napped on a plush cushion after receiving a strong dose of pain medicine to help her cope with the symptoms of a similar condition.
“I’m a single mother and I work full-time,” LaJoie said. “The home-health aspect is very important. I’m constantly in contact with them. I can text them anytime day or night for their advice. It’s crucial. Not having to go to the emergency room means I don’t have to miss work. I’m a dental hygienist. If I don’t work, I don’t get paid. They have counselors. It’s a lot to deal with, and being able to vent to someone is huge.”
Emilio is nonverbal and unable to hold his body upright. As a result of a chromosomal abnormality, he suffers from severe scoliosis that affects his breathing. He has an implant in his lungs and requires surgery every four months to be able to breathe. As his mother talked and occasionally stroked his arm, Emilio lay on a blanket listening and patting his hand on the floor with an expression of contentment.
The pediatric home-health service under the axe by Hospice and Palliative Care of Greensboro also provided social workers to help parents manage their children’s periodic health emergencies.
“They paid my rent one time because I was in the hospital with him,” LaJoie said. “They got a church to contribute $400 to cover half of my mortgage payment.”
Ermentrout, who previously worked as a research professor at UNC-Chapel Hill, said Hospice and Palliative Care of Greensboro’s home-health program was a nationwide model of care up until a couple months ago. Home health is one of four components of Hospice and Palliative Care of Greensboro’s Kids Path program. The agency has indicated it plans to continue the remaining three components, which include hospice for a tiny number of children who are certified by two doctors as being within six months of death, grief counseling for about 200 children a year, and case management for medically fragile children.
“Not many families are in this circumstance, but if you are, this type of thing can make the difference between your family being able to live a semblance of normal life and being in total purgatory,” Ermentrout said, fighting back tears. “It’s a very terrible situation.”
Yntema, the organization’s president and CEO, declined several interview requests for this story, but the agency released a prepared statement citing a 2014 consultant’s report highlighting the challenges of providing home-health services to a relatively small patient population spread over a large geographic area. The statement acknowledged that financial cost was a factor in the agency’s decision to discontinue the program.
“Expenses associated with the home health component represented more than 35 percent of the Kids Path budget — nearly $300,000 annually,” the agency said. “Pediatric home health is available from several other providers. Therefor the service is a duplication of available resources at significant expense. Charitable support remains strong for the program and necessary to continue to provide services for more than 200 children a year. Yet the shortfall created by the home health component was not sustainable.”
Ermentrout said the relatively high cost of home-health service results from a couple factors. Unlike hospice, the agency doesn’t receive a per diem reimbursement from the federal government, and the number of children served by the home-health program is 10 to 20 times larger than the pediatric hospice population.
“Most children who are in life-threatening circumstances are in home health,” Ermentrout said. “Many children die in home health. For all intents and purposes, you can see home health as pseudo-hospice, but they’re not getting the reimbursement per diem.”
Dr. Ernie Schiller, who served as medical director for Kids Path up to his retirement in 2015, said he argued with the former CEO for the last seven years of his tenure that pediatric home health was sustainable, ultimately to no avail. At the time of his retirement, Schiller said there were 45-50 children in the pediatric home health program — a number that has dwindled over the past couple years. Even the previous patient population was only a fraction of the actual number of terminally ill children in Guilford County, which Schiller said is probably closer to 200. Schiller said he advocated to the agency’s leadership that they expand the program rather than shutting it down.
Yntema said in her letter to the service providers who work with Kids Path that the 19 families who receive home-health services will transition to Advanced Home Care or another service provider of their choice at the end of the month. The Greensboro-based company describes itself as “one of the largest Medicare-/Medicaid-certified home care organizations in the Southeast,” serving more than 30,000 patients per day, and Yntema reasoned that “Advanced Home Care has expertise in home health that surpasses our own.”
Ermentrout harbors doubts that Advanced Home Care will be able to match the quality care provided by the registered nurses at Kids Path who are familiar with symptom management for children with complex needs, and perform skilled procedures like the port-a-cath flush her daughter receives once a month. She said she fears that the transfer from Hospice and Palliative Care of Greensboro to Advanced Home Care will be the first step towards discharge for many children, especially if they require procedures that aren’t reimbursable by insurance.
“There’s no reason why Advanced will keep them,” Ermentrout said. “Kids Path kept them because they were referred by local providers…. It was guided by a mission and there was fundraising to support it. When you’re being transferred to an agency that bills insurance and has no mission for caring for children, what is the incentive for them not to discharge the children?”
Advance Home Care could not be reached for comment for this story.
Some of the non-medical services currently provided under the Kids Path home-care program will continue, Hospice and Palliative Care of Greensboro said in its official statement.
“Families who previously received home health services will still have access to Kids Path’s wrap-around services for medically fragile children, including counseling for adults and children with access to volunteer and spiritual care support,” the statement said.
Contradicting Hospice and Palliative Care of Greensboro’s position that pediatric home health is not financially sustainable, Ermentrout said the agency passed up an opportunity to join forces with Cone Health to operate the program. Ermentrout added that she offered to leverage her connections in the medical community and grant-writing experience to raise money for the program. And she said a past donor to Kids Path reached out to Yntema to offer future financial support. The overtures were rebuffed or ignored, Ermentrout said.
“I did fundraisers for them,” Ermentrout said. “There’s an outdoor musical instrument that is dedicated to my daughter in their garden.”
Dr. Schiller said he believes that if the public understood the plight of the children and the number affected, they would rise to the occasion and open their wallets.
“I think it’s scary that the healthcare system is so complex we don’t even know how many kids are at home on ventilators,” Schiller said. “Duke Power probably knows better than us.”
Despite his offer, Schiller said the leadership at Hospice and Palliative Care was unwilling to entertain the idea of a concerted fundraising push.
“There was not even a willingness to give it a try,” he said. “I offered my time to be a spokesperson. I was never taken up on it.”
The decision to discontinue pediatric home care is likely catching many parents by surprise. LaJoie said on Monday she wouldn’t have known but for Ermentrout, her friend, who got wind of the impending changes from her daughter’s pediatrician in early August. LaJoie said she reached out to staff with her concerns around the same time, and received an assurance that nothing would change. Similarly, other supporters who wrote emails expressing concern about the stability of Kids Path received the same response from Yntema reading: “The rumor that you heard is false. There are no plans to close Kids Path.”
Ermentrout charges that Yntema’s response amounts to “semantic games” that she called “sick,” considering that Yntema acknowledged to her personally at the end of August that the agency planned to discontinue the pediatric home-care program.
Following the Aug. 4 resignation of Kids Path Director Marion Taylor, Ermentrout said her daughter’s social worker put in her last day in October, and two registered nurses on the home-health team gave notice the same month.
“Our staff developed a communications plan to announce this decision as soon as it was appropriate,” the agency said in its prepared statement on Monday. “Staff turnover has shortened the transition timeline.”
Schiller said at this point it’s probably too late for Hospice and Palliative Care of Greensboro to reverse course on the decision to cut loose pediatric home health. He said the former employees wouldn’t go back because their trust has been broken.
“I hope with time Advanced Home Care will learn and grow into the skills,” he said. “They need to because they don’t have the confidence of the pediatric community now. They’ll tell you, ‘We don’t have any accrediting dings,’ but if you talk to the pediatricians, they’ll tell you: ‘Ehhh, I’ll use them if I have to.’”
As Ermentrout and LaJoie visited on Monday evening, they worried aloud about a future in which their children’s survival is tenuous, even under the best of circumstances.
“I have a lot more faith Emilio is going to grow up, and that’s probably not going to happen for us,” Ermentrout, Moira’s mother, said. “But whether it’s Moira or Emilio, there are so many risks these children face. I will tell you this about the nurses at Kids Path: They have this fount of information that is so specialized. No one else provides anything like it.”