title: 'I have to live with the decisions I make': laying a foundation for decision making for children with life-limiting conditions and life-threatening illnesses.
abstract: The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this article we lay out factors that bear on the success of clinical consultations and the maintenance of the essential clinician-parent relationship at progression or deterioration of LLCs or LTIs. We suggest an approach to engaging parents in conversations about care and treatment that recognises and appreciates the dilemmas which clinicians and parents face and in so doing provides a way for everyone to live with the decisions that are made. A close analysis of a consultation at progression and excerpts of encounters among parents, clinician and researcher are used to illustrate our approach to research, analysis and development of recommendations for clinical practice.
authors.affiliation: Louis Dundas Centre for Children's Palliative Care, UCL-Institute of Child Health, London, UK.
authors.forename: Myra
authors.initials: M
authors.lastname: Bluebond-Langner
authors.affiliation: Paediatric Oncology Unit, Great Ormond Street Hospital, London, UK.
authors.forename: Darren
authors.initials: D
authors.lastname: Hargrave
authors.affiliation: Louis Dundas Centre for Children's Palliative Care, UCL-Institute of Child Health, London, UK.
authors.forename: Ellen M
authors.initials: EM
authors.lastname: Henderson
authors.affiliation: Louis Dundas Centre for Children's Palliative Care, UCL-Institute of Child Health, London, UK.
authors.forename: Richard
authors.initials: R
authors.lastname: Langner
mesh_terms: D001294:Attitude to Health; D020295:Brain Stem Neoplasms / Q000628:therapy; D002648:Child; D000066491:Clinical Decision-Making; D016638:Critical Illness / Q000628:therapy*; D005260:Female; D005910:Glioma / Q000628:therapy; D006801:Humans; D010166:Palliative Care / Q000379:methods*; D010290:Parents / Q000523:psychology; D011368:Professional-Family Relations; D014342:Truth Disclosure
keywords: Communication; Cystic Fibrosis; Decision-making; Oncology; Qualitative research