title: When is too little care, too much harm in cystic fibrosis? Psychological and ethical approaches to the problem.
abstract: Some parents of children with cystic fibrosis (CF) do not adhere to treatments recommended by the CF team. This can be a challenging issue for CF clinicians and can create conflict between the parents and treating team. Both parents and treating team believe they are acting in the best interests of the child, but do not share a common opinion as to what that entails. In this paper we present an understanding of the psychological framework of parents' illness representation that may foster a better understanding by CF clinicians of how to approach parents who hold a conflicting opinion regarding optimal care. Continuing to work with families towards optimal care is a moral obligation, but the key ethical decision is when to intervene to protect the child. In this paper we introduce the concept of the zone of parental discretion as an ethical tool to help decide the best way forward when parents do not accept medical advice on the optimal care of their child with CF.
authors.affiliation: Department of Respiratory Medicine, Royal Children's Hospital, Australia; Children's Bioethics Centre, Royal Children's Hospital, Australia; Department of Paediatrics, University of Melbourne, Australia; Murdoch Children's Research Institute, Australia. Electronic address: john.massie@rch.org.au.
authors.forename: John
authors.initials: J
authors.lastname: Massie
authors.affiliation: Department of Respiratory Medicine, Royal Children's Hospital, Australia.
authors.forename: Alice
authors.initials: A
authors.lastname: Morgan
authors.affiliation: Children's Bioethics Centre, Royal Children's Hospital, Australia; Melbourne School of Population and Global Health, University of Melbourne, Australia.
authors.forename: Lynn
authors.initials: L
authors.lastname: Gillam
mesh_terms: D001291:Attitude of Health Personnel; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D000066491:Clinical Decision-Making / Q000941:ethics*; D003256:Community Participation / Q000523:psychology; D003550:Cystic Fibrosis / Q000523:psychology / Q000628:therapy; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D016487:Parenting / Q000523:psychology; D010290:Parents / Q000523:psychology*; D010346:Patient Care Management / Q000941:ethics / Q000458:organization & administration; D011368:Professional-Family Relations / Q000941:ethics*
keywords: Cystic fibrosis; Ethics; Psychological