P0559 - Seeking Comfort In Complexity: A Path Home for Permanently Hospitalized Children

Pediatric Palliative Care's guiding principle of whole-patient and whole-family care brings with it a unique opportunity to appreciate and advocate for care gaps and disparities. The growing population of children with medical complexity and technological dependency have represented a challenge in Palliative Care practice as well as resource utilization and economic justice. Serving at the only major academic medical center in an under-resourced state, we have a population of majority-minority, vent-dependent children who, due to socioeconomic disparities, have lived hospitalized for much of their young lives. Palliative Care, along with Complex Care Pediatrics, have been these patients' primary specialty and additional family for the past several years.

Our institution, working with state legislators, the governor, community partners, parental interest groups, and compassionate care providers, has advocated for a home away from home for these medically fragile children. Several methods were employed in quantifying the need and forming the advocacy strategy for advancing the care of this precious population. First, stakeholders and passionate parents were rallied to promote this population to state leaders. These steps gained a champion in the first lady and governor of the state who provided political and financial support. Several parent and community partners were then added to the effort to define a vision of comprehensive and equitable care for the children with medical complexity living in our hospital and other institutions throughout the state. Feasibility studies, needs assessments, and goals of care conversations were then combined with architectural and long-term care expertise to plan a medically-fragile home with the support of the patients, families, institutional leaders and policy makers. Much work was done in speaking with legislators throughout the state in realizing this vision for the children. This new home has recently broken ground and is now being built for the children of our state who need an advocate and a home most.

Although the AAP Legislative Conference was not part of our process, a presentation was given at the local AAP chapter while planning and pressing this project. Relationships therein were leveraged in realizing next steps for further advocacy for this important and often underappreciated population.