title: An integrated model of provision of palliative care to patients with cystic fibrosis.
abstract: Palliative care of patients with cystic fibrosis (CF) is often undertaken by CF teams rather than palliative care teams because of the specialist nature of the disease and the potential role of lung transplantation. We developed an integrated model of provision of palliative care whereby most care is delivered by the CF team using palliative guidelines and pathways, with additional support available from the specialist palliative care team when needed. We report our experience of the terminal care of 40 patients with CF with regard to the circumstances of death, lung transplantation status, specific symptoms and provision of palliative treatments. The transition from disease modifying treatments to palliative care was particularly complex. Patients had a high level of symptoms requiring palliation and most died in hospital. Palliative care is a crucial component of a CF service and requires the specialist skills of both the CF and palliative care teams.
authors.affiliation: Adult Cystic Fibrosis Centre, Royal Victoria Infirmary, Newcastle upon Tyne, UK. Stephen.Bourke@nuth.nhs.uk
authors.forename: S J
authors.initials: SJ
authors.lastname: Bourke
authors.forename: S J
authors.initials: SJ
authors.lastname: Doe
authors.forename: A D
authors.initials: AD
authors.lastname: Gascoigne
authors.forename: K
authors.initials: K
authors.lastname: Heslop
authors.forename: M
authors.initials: M
authors.lastname: Fields
authors.forename: D
authors.initials: D
authors.lastname: Reynolds
authors.forename: K
authors.initials: K
authors.lastname: Mannix
mesh_terms: D000293:Adolescent; D000328:Adult; D003266:Continuity of Patient Care / Q000458:organization & administration*; D003550:Cystic Fibrosis / Q000628:therapy*; D019033:Delivery of Health Care, Integrated / Q000458:organization & administration*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment / Q000458:organization & administration*; D010166:Palliative Care / Q000458:organization & administration* / Q000592:standards; D010348:Patient Care Team / Q000458:organization & administration*; D012189:Retrospective Studies; D019452:Terminally Ill; D055815:Young Adult