Hospices Must Leap Hurdles to Provide Pediatric Inpatient Care

Barriers to expanding pediatric inpatient hospice care include a lack of specialized facilities as well as staff who are sufficiently trained to provide those services.

Children are an underserved population in the hospice realm, particularly when it comes to inpatient care. Seriously ill children and their families often do not have access to inpatient services, mainly because these facilities simply don’t exist within their communities.

Another hurdle is that few hospice clinicians are trained to provide specialized pediatric end-of-life care, according to Christy Torkildson, director of the Children’s Hospice & Palliative Care Coalition of California.

“We need more trained pediatric providers, [and] we need more organizations willing to care for pediatric patients,” Torkildson told Hospice News in an email. “Ideally, hospices would have trained pediatric providers and support teams; that is not realistic when a hospice may only serve two to four pediatric patients in a year. However, those pediatric patients deserve the same care and services that adults can access. Hospice providers have the foundational skills to provide excellent care, they need support to translate those skills for the pediatric patient and their families.”

State of pediatric inpatient hospice

Torkildson is also chair of the National Hospice and Palliative Care Organization’s (NHPCO) Pediatric Facts & Figures Workgroup, which recently released a report analyzing the types of providers and services involved in pediatric hospice and palliative care.

The most common youth age groups served by hospice providers are children between the ages of 1- and 5-years-old and those 6- to 14-years-old. They represent approximately 69% of the pediatric hospice population, according to NHPCO’s 2023 Pediatric Facts & Figures Report.

Fewer than half of hospice and palliative organizations indicated that they have a dedicated pediatric team, according to Ben Marcantonio, NHPCO COO and interim CEO.

“There is a wide-spread shortage of highly trained, pediatric palliative and hospice health care professionals in the workforce,” Marcantonio said in a statement. “This is a barrier to meeting the demands of the ever-growing pediatric palliative care needs. It is crucial to create both individual and group education opportunities to address any misperceptions about pediatric care.”

Though hospices are increasingly expanding their services to include pediatric care programs, not many operate children-specific inpatient facilities. Some hospices have dedicated pediatric wings at their inpatient centers or within hospital settings, while others only provide this care in the home.

Just a handful of inpatient pediatric hospice facilities exist in the United States, including Ryan House in Phoenix, Ariz., California-based George Mark Children’s House and Crescent Cove, which recently opened in Brooklyn Center, Minn. near the Minneapolis area.

A former adult inpatient hospice in Washington, the LadyBug House, is in the process of converting to serve pediatric populations.

Children and young adults more frequently have “higher utilization of inpatient resources” compared to adult patients, NHPCO researchers indicated in the report. Pediatric patients and families may have greater need for inpatient services than adults, but tend to have lower admission rates and lengths of stay, the researchers stated.

Inpatient access and length of stay issues in pediatric patients are related to factors such as uncertain disease trajectories and prognoses, as well as the ability to pursue life-prolonging and curative care alongside hospice, NHPCO researchers indicated.

Providing inpatient hospice to children can involve managing a more complex and complicated range of pain and symptoms than in adults, according to Holly Davis, assistant vice president of clinical services of VIA Health Partners. Davis is also co-chair of NHPCO’s Pediatric Advisory Council.

“The guidelines for children’s pain and symptom management are different across age groups,” Davis said. “Kids can come onto inpatient services with all kinds of genetic disorders and serious illnesses, some far more complex than what we see on the adult side, and so practicing medicine in that realm takes different knowledge sets.”

Key considerations for hospice pediatric inpatient facilities

VIA Health Partners provides adult and pediatric hospice and palliative care in North Carolina and South Carolina. The nonprofit operates inpatient hospice facilities, with pediatric care provided at each location.

“We developed these inpatient units for families to have a place to just be a family while seeking pain and symptom management,” Davis said. “To not offer these services is an injustice to families experiencing serious illness.”

Clinical education and certification is a primary driver behind how VIA Health Partners divides pediatric hospice care, according to Davis. For instance, clinicians at one facility are certified to care for patients 13 or older, while others may have training in caring for newborn and infant populations, she explained.

When developing inpatient pediatric centers, hospices need to assess how their staff will communicate and coordinate with other health providers involved in a child’s care, according to Davis.

“Demand for inpatient pediatric care really depends on the type of patient you have,” she told Hospice News. “It takes a village to care for a child, and it’s about fostering those provider relationships and learning from one another’s expertise. You can have a very complex patient come to your inpatient care, and it’s about collaborating with your local children’s hospital, pediatrician and pharmacists to ensure the medical care is all on the same page. But it’s also about having features in your facility that really offer that comforting, welcoming place for care.”

Designing a facility with children and family needs in mind is also key, she said. For instance, having smaller-sized beds or cribs available for children is one consideration for pediatric inpatient centers, Davis explained. Additionally, it’s important to consider having larger beds and other sleeping areas that provide enough space for parents and other family members to stay overnight with patients, she added.

“It’s important that children have a calm, relaxing environment that feels more like home and can provide that intense level of pain and symptom management,” Davis said. “It’s really creating a patient room that feels more like their bedroom, maybe it has their favorite character or color.”

Hospitals and other medical facilities can be less than conducive to family needs and celebrations of life, according to Little, a North Carolina-based architectural design company. The company recently outlined a design concept for the Papillio Domus, or the Butterfly House, an inpatient facility for terminally ill children.

Some of the important considerations for pediatric facilities include prioritizing spaces for quality family time, having a strategic location with proximity to hospitals, pediatricians and access to transportation such as airports, representatives from Little told Hospice News in an email.

Additionally, having “ample outdoor spaces” and “connection to animals” such as pet therapy services, can also be crucial elements for pediatric patients, they said.