title: Conflicts Between Parents and Health Professionals About a Child's Medical Treatment: Using Clinical Ethics Records to Find Gaps in the Bioethics Literature.
abstract: Clinical ethics records offer bioethics researchers a rich source of cases that clinicians have identified as ethically complex. In this paper, we suggest that clinical ethics records can be used to point to types of cases that lack attention in the current bioethics literature, identifying new areas in need of more detailed bioethical work. We conducted an analysis of the clinical ethics records of one paediatric hospital in Australia, focusing specifically on conflicts between parents and health professionals about a child's medical treatment. We identified, analysed, and compared cases of this type from the clinical ethics records with cases of this type discussed in bioethics journals. While the cases from journals tended to describe situations involving imminent risk to the child's life, a significant proportion of the clinical ethics records cases involved different stakes for the child involved. These included distress, poorer functional outcome, poorer psychosocial outcome, or increased risk of surgical complications. Our analysis suggests that one type of case that warrants more detailed ethics research is parental refusal of recommended treatment, where the refusal does not endanger the child's life but rather some other aspect of the child's well-being.
authors.affiliation: Centre for Health Equity, Melbourne School of Population and Global Health, University of Melbourne, Level 4, 207 Bouverie St., Parkville, VIC, 3010, Australia. rmcdo@unimelb.edu.au.|Children's Bioethics Centre, Royal Children's Hospital, Melbourne, Parkville, Australia. rmcdo@unimelb.edu.au.
authors.forename: Rosalind
authors.initials: R
authors.lastname: McDougall
authors.affiliation: Centre for Health Equity, Melbourne School of Population and Global Health, University of Melbourne, Level 4, 207 Bouverie St., Parkville, VIC, 3010, Australia.|Children's Bioethics Centre, Royal Children's Hospital, Melbourne, Parkville, Australia.
authors.forename: Lauren
authors.initials: L
authors.lastname: Notini
authors.affiliation: Centre for Health Equity, Melbourne School of Population and Global Health, University of Melbourne, Level 4, 207 Bouverie St., Parkville, VIC, 3010, Australia.|Children's Bioethics Centre, Royal Children's Hospital, Melbourne, Parkville, Australia.
authors.forename: Jessica
authors.initials: J
authors.lastname: Phillips
mesh_terms: D001291:Attitude of Health Personnel; D001294:Attitude to Health; D001315:Australia; D001675:Bioethics; D002648:Child; D002669:Child Welfare / Q000941:ethics*; D026690:Ethics, Clinical; D006801:Humans; D010290:Parents; D010506:Periodicals as Topic; D011368:Professional-Family Relations / Q000941:ethics*; D011996:Records; D012306:Risk; D013315:Stress, Psychological; D016896:Treatment Outcome; D016312:Treatment Refusal / Q000941:ethics*
keywords: Clinical ethics; Conflict; Paediatrics; Parents