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October 2017

Charlie Gard and the Limits of Best Interests

Author Affiliations
  • 1Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington
  • 2Division of Bioethics, Department of Pediatrics, University of Washington School of Medicine, Seattle
  • 3Division of Hematology/Oncology, Department of Pediatrics, University of Washington School of Medicine, Seattle
JAMA Pediatr. 2017;171(10):937-938. doi:10.1001/jamapediatrics.2017.3076

In July 2017, the case of Charlie Gard received international attention, raising difficult questions about when hospitals and courts should override parental decisions. Charlie Gard was an 11-month-old British infant with infantile-onset mitochondrial DNA depletion syndrome. While his parents and medical team were pursuing options for investigational nucleoside therapy, Charlie’s condition deteriorated. His medical team then determined further treatment was not in Charlie’s best interests, and a judge agreed. His parents petitioned to transfer Charlie’s care to the United States for experimental therapy, but the courts held that this transfer was not in Charlie’s best interests and that life support should be stopped.1 After an expert consultation revealed it was too late for the experimental treatment, the parents sought to take Charlie home to die. The court ordered Charlie be moved to hospice care instead, and he died shortly after treatment was withdrawn.2

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