O3241: Pediatric Palliative Care and Respite Homes

Background: In the US, there are ~1,000,000 children with medical complexity (CMC) Because they spend most of their lives living with their families, parents must become expert caregivers, in addition to work, parenting other children, and spousal needs. Shortages of pediatric home health nurses, longer lives of CMC through medical advances, and insufficient insurance reimbursement place additional demands on parents.

Parents of CMC are exhausted, stressed, and isolated. Caregiver burn-out is a consequence of 24/7 care. Respite services would mitigate some of the caregiving burden but are not available to most families.

Most children’s hospitals have palliative care teams; however, they typically do not extend into children’s homes where community-based care is lacking.

Pediatric Palliative Care and Respite Homes (Homes) are community-based models that provide needed overnight respite and palliative support for CMC and their families. A Home is also a temporary place for CMC when a parent is ill, has surgery, or otherwise cannot care for the child, avoiding the use of an acute hospital bed. These Homes extend home healthcare and reduce hospital dependence.

The UK, with 54 Homes, versus 7 in the US, demonstrates a significant care gap for US CMC.

Project Description: National Center for Pediatric Palliative Care Homes (NCPPCH, https://www.ncppch.org/) was founded in 2022 to raise awareness and support the establishment of more Homes in the US.

NCPPCH is a national collaborative bringing all the existing Homes and other interested communities together to work towards providing this community-based care to all CMC and their families.

Within the 7 current Homes, there are 56 beds; using data we collected, a child typically stays 2-4 times per year, with a length of stay between 1-10 days. On average, families use a Home, 6.32 days per year, though some may stay up to 28 days annually.

93% of families with CMC live in communities with no access to a dedicated Home. (1) To align with the UK, we need 16,425 beds.

Through mentoring, individual consultations, federal and state advocacy, we are making progress. Today, there are 33 emerging initiatives across 27 states pursuing establishment of Homes and collaborating with NCPPCH. Homes in these states could provide much needed care for 165,000 more CMC and their families.

Discussion: Each Home provides the respite and palliative care that CMC need, giving parents a chance to recharge and care for siblings. A community-based Home is an extension of a family’s own home, healthcare, and a temporary haven.

NCPPCH’s actions continue to support the expansion of these services to more communities, thus serving more CMC and their families.

Conclusion: We want all CMC and their families to have access to safe, compassionate, and skilled Homes in their community for trusted palliative and respite care.