title: A quality of life quandary: a framework for navigating parental refusal of treatment for co-morbidities in infants with underlying medical conditions.
abstract: Parental refusal of a recommended treatment is not an uncommon scenario in the neonatal intensive care unit. These refusals may be based upon the parents' perceptions of their child's projected quality of life. The inherent subjectivity of quality of life assessments, however, can exacerbate disagreement between parents and healthcare providers. We present a case of parental refusal of surgical intervention for necrotizing enterocolitis in an infant with Bartter syndrome and develop an ethical framework in which to consider the appropriateness of parental refusal based upon an infant's projected quality of life.
authors: Neonatal-Perinatal Medicine, Boston Children's Hospital, Boston, Massachusetts USA.
authors: Sarah N
authors: SN
authors: Kunz
authors: Pediatrics, Seattle Children's Hospital, Seattle, Washington USA.
authors: Ryan M
authors: RM
authors: McAdams
authors: Douglas S
authors: DS
authors: Diekema
authors: Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 Ninth Avenue, M/S: JMBa-6, Seattle, Washington 98101 USA. djopel@uw.edu.
authors: Douglas J
authors: DJ
authors: Opel
mesh_terms: D000328:Adult; D001477:Bartter Syndrome / Q000150:complications; D002755:Choice Behavior / Q000941:ethics; D003657:Decision Making / Q000941:ethics*; D013505:Digestive System Surgical Procedures / Q000941:ethics / Q000379:methods / Q000592:standards; D020345:Enterocolitis, Necrotizing / Q000150:complications / Q000175:diagnosis / Q000601:surgery; D026689:Ethical Analysis; D033061:Ethics Consultation; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal; D015931:Intensive Care, Neonatal / Q000941:ethics*; D008297:Male; D033282:Parental Consent / Q000941:ethics*; D047928:Premature Birth; D011368:Professional-Family Relations; D011788:Quality of Life; D016312:Treatment Refusal / Q000941:ethics*; D028761:Withholding Treatment / Q000941:ethics