Children with medical complexity (CMC) and their families are a growing subpopulation of all children cared for by pediatricians. These are children whose lives are sustained by the knowledge and practice of advanced medicine; the medical community is obligated to take great responsibility for these patients. The field of complex care has emerged over the past 20 years in partnership with primary care colleagues to optimize the health outcomes of CMC and the function of their families.
This issue of Pediatric Annals focuses on two core components of caring for CMC: (1) building a partnership with families and (2) developing trust. The first article, “Lessons Learned, Best Practices: Care Coordination for Children with Medical Complexity,” by Dr. John Maypole, Tiffany Gavin, Dr. Mary Ann de Banate, and Dr. Matthew Sadof provides an overview of the lessons learned from their years of experience in the field regarding how to provide care coordination for CMC, including the societal challenges of how to fund these needed services; the authors also provide an update on CMC care during the coronarivus 2019 pandemic. The theme of parents as partners is expanded in the next article, “Partnering with Parents of Children with Medical Complexity: A Framework for Engaging Families for Practice Improvement,” by Dr. Jessica Lander Schnell, Sarah Johaningsmeir, Tera Bartelt, and Dr. David A. Bergman; the authors describe how to best engage families in an effort to truly get to value-based outcomes. In the third article, “Decision-Making for Children with Medical Complexity: The Role of the Primary Care Pediatrician,” Drs. K. Jane Lee, Douglas L. Hill, and Chris Feudtner walk us through the process of shared-decision making—when families are confronted with medical choices pediatricians can help them arrive at a decision based on the family's ideals and interests, in concert, not conflict, with medical advice.
Next, in the article, “Overmedicalization in Children with Medical Complexity,” the difficult topic of overmedicalization is discussed by Drs. Elisabeth Pordes, Meggan Goodpasture, and Brett J. Bordini, illustrating how pediatricians not only have to build trust with caregivers, but also recognize when a child may unintentionally or intentionally receive harm by unnecessary care being pursued by the family; care we may be inadvertently complicit in providing. The final article, “Caring for Maya: A Family, Pediatrician, and Complex Care Partnership,” by Ms. Holly Owens, Dr. Sarah P. Hansen, and Dr. Lee is a story illustrating the positive effect patients, families, primary care, and tertiary care physicians can all have on each other—the humanism of our profession, a concept framed for me by Dr. Lee.
I am grateful to all the authors who have made this issue possible and acknowledge their difficult task of addressing topics that are still being examined in the emerging field of complex care. Many additional areas such as the multiple financial impacts of CMC, medical and surgical inpatient care, psychological care of CMC's families and siblings, family productivity, pharmacy optimization, and transition of care to adult providers as CMC age out of the traditional pediatric age range; these are all active areas of ongoing research within the complex care community.
The accompanying Figure 1 by Dr. Maypole sums up complex care; it takes a team to truly help children with medical complexity and their families, and we are all on it. Thank you for the role you play in supporting children with medical complexity, a purpose we can all be proud of while being grateful for the opportunity.
Complex care, it takes a team. Used with permission from Dr. John Maypole, www.twitter.com/ drmaypole, Boston University School of Medicine.