P3B015: A Cultural and Bureaucratic Challenge for a Medically Fragile Child: Developing Goals of Care Post-termination of Parental Rights in South Carolina

Introduction: For foster children in South Carolina, Department of Social Services (DSS) becomes the medical decision maker (MDM) following judicial orders for Termination of Parental Rights (TPR). Developing goals of care (GOC) is difficult when the MDM is unfamiliar with the individual’s life, as GOC are individual-specific and value-based. This is further complicated for children with global neurologic dysfunction who are unable to assent to medical interventions. We propose a framework for developing GOC for a unique, vulnerable population while enhancing DSS’s confidence in MDM for a child in their custody experiencing clinical decline.

Case Description: Patient was a 13-year old medically fragile male with perinatal anoxic brain injury, acquired multi-organ system dysfunction requiring assistance with all activities of daily living, and limited expressive-receptive communication abilities. He resided with the same foster family from initial placement at age 3, and TPR ordered at age 5. Despite his foster parents and home nurses’ attentive care, he experienced natural clinical declines . Patient’s pediatrician and foster parents shared their concern he was deteriorating. A referral was place to Pediatric Palliative Care (PPC) for developing GOC. PPC combined traditional methods of assessing the clinical condition, disease trajectory, and anticipated needs with a novel approach towards enhancing surrogate MDM. DSS agreed with recommended GOC prioritizing patient’s comfort for the remainder of his life. The child survived an additional year, eventually dying comfortably with hospice services utilized within his foster home.

Discussion: Following TPR, foster parents of medically fragile children often are the only adults that have sufficient direct interaction to describe their perceived quality of life, yet they are unable to consent to GOC. South Carolina DSS was historically hesitant in consenting to comfort focused interventions for a medically fragile child in their custody, despite death being inevitable as a function of declining health. This frequently led to escalations in medical care and increased burden of treatment, morbidity, and hospitalizations that rarely yielded an improved clinical baseline. DSS voiced the lack of past legal precedent as a barrier to making these decisions. This novel approach fostered improved confidence in adhering to medical recommendations while minimizing harm of treatment and maximizing quality of life for a child in their custody.

Conclusion: PPC developed concise medical recommendations following discussions with the patient’s extensive medical team, while incorporating foster parents’ perspective on whether proposed interventions would negatively impact the quality of life for a medically-fragile child as they are dying of natural causes. Review of proposed GOC by the Ethics Committee further supported the appropriateness at this phase of the child’s life. PPC approach to GOC provided DSS, as the patient’s legal MDM, with sufficient information to make an informed decision in the child’s best interest.