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Despite obstacles to expanding pediatric hospice care, Community Hospice & Palliative Care, has seen its program’s census and workforce grow.
The Florida-based provider is an affiliate of Alivia Care Inc. Its pediatric program, dubbed Community PedsCare, has been more than 20 years in the making. First launched in 2000, the program spans a five-county region across northeastern and north central portions of the state, serving seriously ill patients from prenatal to age 21.
The pediatric program’s current average daily census hovers around 240 patients, a climb from roughly 55 patients in 2008, according to Danielle Eaves, child life and therapeutic recreation specialist for the Community PedsCare program.
Community Hospice & Palliative Care has been able to expand the program in part due to stronger Medicaid reimbursement channels designed to better support seriously ill children and their families, Eaves stated.
“[It’s] recognizing that there was a large number of children in our area who were living with a life-threatening or life-limiting condition,” Eaves told Palliative Care News. “It’s a very difficult time trying to navigate all the problems that arise from having a child with a medical condition. It’s been a real privilege to see the program grow and expand to support more families. In Florida, like several other states throughout the country, there is a Medicaid reimbursement program for pediatric palliative care because there’s recognition in the value it provides and the cost savings it helps with avoiding hospitalizations.”
The Community PedsCare program has an interdisciplinary staff of about 22 employees including a chaplain, social workers, child life specialists, music therapists and a respite program with registered nurses that provide care to families, among others.
The program consists of four main elements — a perinatal program, a palliative care program, concurrent hospice care services and a community outreach and education program, Keeping in Touch Extended Support (KITES). The KITES program helps provide continued support for children when their condition improves beyond palliative or hospice care needs, as well as provide connections to Community Hospice & Palliative Care’s bereavement services for those experiencing a loss.
In addition to hospice and palliative care, the pediatric program also helps families with medication management and durable medical equipment (DME). Medical costs can be particularly high for families, who often rely on insurance plans that do not cover the full interdisciplinary scope of serious illness care, according to Eaves.
The financial pieces of operating such programs can be complicated, Eaves indicated. Philanthropic support, state-funded grant programs and growing Medicaid reimbursement channels have made up the mix of financial sustainability for the Community PedsCare program, she stated.
Community Hospice & Palliative Care has been digging into more sustainable ways to support its pediatric services, according to Eaves. The program has brought in roughly $80,000 to $90,000 annually through Medicaid reimbursement, with concurrent hospice as a contributor to recent revenue and census growth, she said. The program also receives varying amounts of philanthropic dollars.
Having stronger reimbursement channels has been crucial to balancing clinical capacity amid rising demand, said Eaves. Improved Medicaid pediatric palliative payment support has allowed the organization to hire more staff.The Community PedsCare program has doubled its nursing workforce in the last few years, she indicated.
“Increasing that concurrent care, hospice service delivery per diem has really helped, as well as our foundation’s support,” Eaves said. “Our executive team has been very adamant that these people with private insurance are not denied access to pediatric palliative care because of Medicaid restrictions. It’s having buy-in from all of these stakeholders. From a service delivery model perspective as far as producing revenue, upping or hospice census has helped tremendously. As a result, we’ve been able to prove the need to grow the number of nurses that we have in this program.”
Prolific misconceptions among the public and health care providers represent another obstacle to building and sustaining pediatric palliative and hospice programs, Eaves stated.
Many families feel overwhelmed when they receive a serious or terminal illness prognosis and lack the insight around the supportive services included in pediatric palliative care, she said. On the provider side, it can be challenging to hold conversations around goals of care without training or advanced knowledge, Eaves said.
Having a diverse and wide base of referral streams is an important growth lever for pediatric hospice and palliative care programs, according to Eaves. The Community PedsCare program’s main referral sources are hospitals and pediatric physicians, along with emergency and outpatient care clinical settings, she said.
The program is offered in collaboration with the Wolfson Children’s Hospital, Nemours Children’s Specialty Care, and the University of Florida-Jacksonville.
“It’s showing them that we are the community-based, in-home providers that help manage patients,” Eaves said. “It’s helping these children live their best lives and be as pain free as possible. Families don’t know how to access the resources in their community or know what their child is eligible for. We really bridge that gap. We provide comfort care throughout the end of life and ensure that they have the best quality of life.”
