In the US and Canada, children with medical complexity (CMC) comprise 1-3% of all children, but account for up to a third of child health expenditures1, 2. Care for this vulnerable population is a significant cost to the healthcare system and individual families. However, most research has been done to manage these patients after they become complex rather than identifying children at risk and assisting with informed decision making early in the child’s healthcare journey. Often parents are often bombarded with multiple lifesaving decisions in the course of their child’s illness with minimal preparation, education, or long term planning; only to be “left” at the end when no cure or correction is found. Continued medical advances will only add to these numbers. Healthcare must move from a short term, reactive approach to a proactive partnership for the care of CSHCN. The keys to successful partnership include early identification of children with complexity, understanding of the parent/child goals of care, discussion of both short and long term outcomes of medical decisions, and flexibility of the medical team to modify care options to meet the needs of the family.
Dr. Karen Smith is the chief of the Division of Hospitalist Medicine at Children’s National Health System in Washington, DC. She began her career as an army nurse before becoming a hospital based pediatrician. Her experience working with children and adults with complex medical needs led to her position as the Chief Medical Officer at The HSC Pediatric Center, a pediatric rehabilitation hospital, in Washington, DC. During this time she served as the chair for the District of Columbia Pediatric Palliative Care Collaborative and the District of Columbia Children with Special Healthcare Needs Advisory Board.