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J Cyst Fibros. 2007 Nov 30;6(6):396-402. Epub 2007 May 3.

Effects of lung transplantation on inpatient end of life care in cystic fibrosis.

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Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, NC 27599-7220, USA.



The impact of lung transplantation on end of life care in cystic fibrosis (CF) has not been widely investigated.


Information about end of life care was collected from records of all patients who died in our hospital from complications of CF between 1995 and 2005. Transplant and non-transplant patients were compared.


Of 38 patients who died, 20 (53%) had received or were awaiting lung transplantation ("transplant" group), and 18 (47%) were not referred, declined transplant, or were removed from the waiting list ("non-transplant"). Transplant patients were more likely than non-transplant patients to die in the intensive care unit (17 (85%) versus 9 (50%); P=0.04). 16 (80%) transplant patients remained intubated at or shortly before death, versus 7 (39%) non-transplant patients (P=0.02). Do-not-resuscitate orders were written later for transplant patients; 12 (60%) on the day of death versus 5 (28%) in non-transplant patients (P=0.02). Transplant patients were less likely to participate in this decision. Alternatives to hospital death were rarely discussed.


Receiving or awaiting lung transplantation affords more aggressive inpatient end of life care. Despite the chronic nature of CF and knowledge of a shortened life span, discussions about terminal care are often delayed until patients themselves are unable to participate.

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