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November 2015

Family-Centered Care and High-Consequence Pathogens: Thinking Outside the Room

Author Affiliations
  • 1Division of Infectious Diseases, Department of Medicine, Boston Children’s Hospital, Boston, Massachusetts
  • 2Division of Infectious Diseases, Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia
  • 3Division of Infectious Diseases, Department of Pediatrics, Johns Hopkins University, Baltimore, Maryland
JAMA Pediatr. 2015;169(11):985-986. doi:10.1001/jamapediatrics.2015.1753

Can we protect ourselves? Can we protect our community? With the emergence of the Ebola virus outbreak, these questions have captured the attention of the American audience; however, these issues are hardly new to the US health care system. Caring for individuals with presumptive or confirmed pathogens of high consequence, such as Ebola virus, Middle East respiratory syndrome coronavirus, pandemic influenza, and severe acute respiratory syndrome, to name a few, provokes not only technical but also ethical dilemmas to our current health care infrastructure. While we mostly understand the science of infectious disease transmission and recognize that intensive medical care generally improves outcomes, what remains less certain is how to provide supportive care safely and compassionately. This is especially apparent in the care of a vulnerable infected child. Parents are often encouraged to aid in hands-on care of their hospitalized child, making parental presence the cornerstone of family-centered care. However, in suspected or confirmed cases where pathogens are of high consequence, we posit that parental presence may pose significant risk to the patient, parents, health care professionals, and public. We believe infections with high-consequence pathogens fundamentally alter our risk-benefit calculus and that, in these scenarios, temporary physical separation of the infected child from parents is the most effective option for safe care delivery. We challenge the pediatric medical community to view patient isolation and parental separation not as a threat to family-centered care but rather as an opportunity to reflect on our care provision, foster innovation and creativity, and cultivate a new sensitivity in family centeredness.