A new pediatric hospice and respite facility will soon launch in central Texas, among the first of its kind in the state.

Dubbed Abbey House, the center will be located in Austin, Texas, and is supported by the Abigail E. Keller Foundation. Established in 2019, the foundation began in part with community donations and philanthropic support from a family that received care from pediatric hospice and palliative provider Dell Children’s, part of the nonprofit health system Ascension.

Potential sites for the facility are currently under review, which is projected to open sometime in 2027 and feature six to eight patient rooms as well as respite beds, according to Melissa Keller, board president and co-founder of the Abigail E. Keller Foundation. Parents, guardians and families across the country need stronger respite and end-of-life support when a child becomes terminally or seriously ill, Keller stated.

“My daughter Abbey was born in 2007 as a healthy baby girl, but within two or three months had all these issues and was medically fragile,” Keller told Hospice News. “We spent an average of 100 days a year in a hospital or clinic at Dell Children’s. We celebrated 11 birthdays with her and they did so much for us. We’re proud of our relationship with them. After going through this journey, we realized having a lot of services for families is a huge order. It’s a hard time, and we need ways to take the stress off of these parents and caregivers.”

Pediatric facility opportunities, challenges

A capital campaign is currently underway to support the design and construction of Abbey House. The center will be constructed with support from Michael Hsu Office Of Architecture, a local firm. The pediatric hospice facility will feature sensory areas, a theater, a music room and an indoor swimming area.

Opening a hospice and respite center was a dream oriented around the nonprofit’s two-pronged approach of providing both individualized family-based services and a location to support medically fragile pediatric populations, according to Sharon Halloran, founding member, executive assistant and program director at Abigail E. Keller Foundation.

“This is a space we need to be going into. We wanted a place for kids to come and almost feel like they’re at camp,” Halloran said. “We want kid-friendly colors, a place for them to have fun, someone to attend to and interact with them and where they feel safe and have lots of activities available.”

The new hospice and respite facility is the most recent project of the foundation, which launched with nearly $75,000 in philanthropic donations that Keller received at a dinner commemorating her daughter’s birthday following her death.

The nonprofit began by donating funds for families’ medical equipment costs at Dell Children’s Medical Center and the Dell Children’s Comprehensive Care Clinic. As the organization grew, services diversified to include individualized care baskets, financial grants for medical and nonmedical costs, and a “birthday-in-a-box” program with party and celebration supplies.

Very few inpatient hospice centers nationwide focus specifically on pediatric populations, which can leave families facing a plethora of challenges, Keller said. While community-based support is growing, caregivers often lack sufficient supportive resources and respite opportunities

“There’s a lot that will be determined,” Keller told Hospice News. “We’re working with different regulatory and licensing in pediatrics and sort of being pioneers in this state as we try to see how we can make this work since these services don’t exist. A child can go on hospice but the services provided are different. It’s not all about pain management, it’s a special population to have services for.”

The journey toward the facility’s launch has come with some obstacles, she added. These have included navigating reimbursement pathways, operations and staffing and patient eligibility determinations alongside establishing new care models.

Terminally ill children are eligible to receive hospice while seeking curative and concurrent care and therapies. This opens up a complicated reimbursement system for providers and families to navigate with private insurance, a main avenue of payment for pediatric services.

The largest goal of the pediatric hospice facility is to offer care at no cost to families, but this will require a heavy financial lift to support, according to Keller. Some similar facilities operate fueled primarily by philanthropic support, with reimbursement avenues supporting only 25% to 30% of their overall revenue, she stated. Navigating care delivery models will in part hinge finding sustainable payment pathways that support complex patient and family needs.

“It will all depend on how we can look at the state of Texas and see what type of reimbursement revenue that we would qualify for or could get,” she said. “What will eligibility criteria look like, what type of children will be admitted and where they’ll come from? There are tiers of acuity with children, but there are kids with palliative care needs and life-limiting conditions who qualify for respite. We’re looking at what other states have done to come up with a model for care here for medically fragile children.”

Shaping care models

Building and retaining both provider and community partnerships will be a key to sustainability of the facility, Keller stated. The average operating cost of a children’s hospice and respite center hovers around $3 million annually on average, and sustaining long-term financial support will be an ongoing challenge, she added.

The foundation is in process of solidifying partnerships with local pediatric hospice and palliative care providers who can offer a wide range of interdisciplinary services at Abbey House, Keller indicated. Among the potential providers in consideration is Dell Children’s, though no formal agreement has been made.

Children’s end-of-life and serious illness trajectories vastly differ from adults, requiring a unique skill set among providers to deliver goal-concordant care, according to Dr. Patrick Jones, section chief of pediatric palliative care at Austin, Texas-based Dell Children’s Medical Center. Jones is also medical director of Dell Children’s at Home and associate professor of pediatrics at The University of Texas at Austin.

Supporting pediatric palliative and hospice populations also requires knowledge of an intricate health care delivery system, one that can complicate families’ ability to support a child in the home and afford facility- or hospital-based care, Jones stated. Helping families find a balance between caregiving and quality of life is incredibly important to pediatric hospice care, he added.

“Navigating the multiple outpatient visits, different home-based services and transitioning in and out of hospitalizations is exhausting and fraught with avoidable suffering,” Jones told Hospice News in an email. “The challenge before today’s pediatric health care professionals is how do we change this system to decrease this suffering while supporting people through the suffering that is truly unavoidable.”

A respite facility with staff trained to handle complex medical needs offers families a place they can trust to care for their child, which can and should be a part of the pediatric health care system, Jones indicated. Pediatric-focused hospice centers could help bridge gaps of care for families in tremendous need of logistical, practical, medical, financial and psychosocial support, he added.

Greater continuity is needed among the Medicaid reimbursement systems that better support pediatric palliative and hospice care, he added. The state-by-state variation creates “significant barriers” to access and utilization of these services, driving a need for a similar continuum of care payment model that supports adult post-acute services, according to Jones.

“We can talk all day about supporting families, creating space for processing emotions and helping with decision-making, but if we do not also focus on addressing the concrete care needs of children and their families, we risk becoming the cloud in the middle of a drought that delivers shade, but never rain,” Jones said. “It is to understand the adult post-acute care system, and to work towards implementing a similar continuum of care in the pediatric health care system.”