WS09.8 End-of-life care in CF patients: France, 2007–2010

Abstract

Background Cystic fibrosis (CF) can be responsible for premature death in young adults, but few data exist on end-of-life care in CF patients. Methods All deaths that occurred in CF patients in France between 2007 and 2010 were identified using the French CF Registry and medical records were obtained from CF centres. Circumstances of death were determined by an independent Mortality Adjudication Committee using data contained in medical records. Results Of 256 deaths [129 without lung transplantation (LTX), 127 after LTX], 215 (84%) occurred in hospital and 151 (59%) occurred in intensive care units (ICUs). No difference in care setting at death was observed when comparing deaths occurring without LTX vs. after LTX (in hospital deaths: 80% vs. 88%, P = 0.09; ICU deaths: 53% vs. 65%, P = 0.08). Of 129 deaths occurring without transplantation, only 25 patients died when listed for lung transplantation. Among patients who died without LTX, palliative care was implemented in less than 30% of patients, mostly in patients with major contraindication to transplantation. Major difference in end-of-life care were observed in patients who died with the first year after LTX as compared to those who died more than one year after LTX: ICU deaths, 92% vs. 47%; invasive ventilation at the time of death, 90% vs. 41%; palliative care, 6% vs. 45%, respectively (all comparisons, P Conclusion Deaths in CF patients occurred mainly in hospital, most often in ICUs under mechanical ventilation, even in patients not listed for LTX. Palliative care was mostly applied to patients with contraindication to LTX and to patients who died of late complications after LTX.