The aim of this project is to develop a community-specific model for a hospital-based interdisciplinary clinic for the most medically complex of children with special healthcare needs. This project grew out of a need for physician directed leadership and long-term planning for children in our local community based pediatric hospice, Edmarc Hospice for Children. Many children in Edmarc have multiple sub-specialists but lack a primary care physician who is comfortable or willing to direct patient care as a team leader, especially when it comes to palliative care and/or end of life care. Other Edmarc patients lack an identified primary care physician all together. Often these children receive fragmented care. With multiple sub-specialists involved in an outpatient community-based model there is often lack of care coordination among physicians: the pediatrician is left out completely or lacks the time to counsel families appropriately. This results in a lack of overall goals of care for medically complex patients and their families. There is no one provider overseeing the “big picture.”
With CATCH funding I will complete a formal needs assessment, establish an interdisciplinary project steering committee, and complete multiple focus groups with interested parties in order to build a credible body of evidence to make the case for a physical medical home for medically complex children in our community. In addition, I will coordinate existing resources in our community dedicated to this population and build on the successes of current programs in place at our institution in order to develop a better model of care.