Journal article

End-of-life care in adults with cystic fibrosis

Jennifer AM Philip, Michelle Gold, Sharon Sutherland, Felicity Finlayson, Maxine Braithwaite, Tom Kotsimbos

JOURNAL OF PALLIATIVE MEDICINE | MARY ANN LIEBERT INC | Published : 2008

Abstract

BACKGROUND: Cystic fibrosis (CF) is a life-limiting congenital disease, with most patients dying at a young age of progressive lung disease. Lung transplantation offers hope for many but may not occur. There is little to guide the provision of palliative care to this young population who maintain hope in the possibility of lung transplantation. METHODS: To inform the development of an appropriate model of palliative care, a medical record review of CF patients dying within a 5-year period without lung transplantation was undertaken. The aspects of care that were preventative, therapeutic, or palliative were quantified. RESULTS: Of the 20 records studied, all died in hospital. Only 15% of pat..

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