title: Use of guidelines when planning home care of a girl with severe congenital myopathy.
abstract: We use issues that arose in the management of a 4-year old girl with a congenital myopathy to consider the tension between respecting the choices and decisions of the child's parents and applying clinical practice guidelines that emphasise minimising risk to the child. This case raises the issue of when it is reasonable to override parents' choice of management options.
authors.affiliation: Long-Stay Ventilation Team, Children's Hospital at Westmead, Westmead, New South Wales, Australia.
authors.forename: Kelly
authors.initials: K
authors.lastname: Gray
authors.affiliation: Department of Clinical Bioethics, Children's Hospital at Westmead, Westmead, New South Wales, Australia.|Discipline of Child Health, University of Sydney, Sydney, New South Wales, Australia.
authors.forename: David
authors.initials: D
authors.lastname: Isaacs
authors.affiliation: Department of Clinical Bioethics, Children's Hospital at Westmead, Westmead, New South Wales, Australia.|Discipline of Child Health, University of Sydney, Sydney, New South Wales, Australia.
authors.forename: Henry
authors.initials: H
authors.lastname: Kilham
authors.affiliation: Plunkett Centre for Ethics in Health Care, St Vincent's Hospital Sydney and Australian Catholic University, Darlinghurst, New South Wales, Australia.
authors.forename: Bernadette
authors.initials: B
authors.lastname: Tobin
authors.affiliation: Long-Term Ventilation and Sleep Medicine, Children's Hospital at Westmead, Westmead, New South Wales, Australia.|Discipline of Child Health, University of Sydney, Sydney, New South Wales, Australia.
authors.forename: Karen
authors.initials: K
authors.lastname: Waters
mesh_terms: D002675:Child, Preschool; D005260:Female; D017408:Guidelines as Topic; D006285:Health Planning; D006699:Home Care Services; D006801:Humans; D009135:Muscular Diseases / Q000235:genetics*; D019982:Organizational Case Studies; D010166:Palliative Care; D010287:Parent-Child Relations; D011788:Quality of Life; D012720:Severity of Illness Index
keywords: autonomy; best interest; guideline; palliative care; quality of life