Background: Cystic fibrosis (CF) remains a lethal condition where a palliative approach is often taken at the end of life. We wanted to evaluate how lung transplantation impacts end of life care in adult CF patients.
Methods: Data were abstracted using a standardized data collection instrument from all outpatient and inpatient records of adult CF patients with an FEV1< or =30% or prior lung transplantation followed at our Center. Comparisons were made between those who were listed/received lung transplant and those who were not listed.
Results: A total of 41 patients met the entry criteria. Of these, 63% (n=26) were referred for lung transplant evaluation and 39% (n=16) had undergone lung transplantation. Of these 41, 59% (n=24) are deceased. The majority of deceased patients expired in an acute care hospital (63%, n=15). There was no difference in site of death between the two groups (hospital versus home). However, listed/transplanted patients were more likely to die in an intensive care unit setting compared to patients not listed/transplanted (p=.013).
Conclusions: Most of our CF patients' deaths occurred in an acute care hospital. Lung transplant significantly alters site of death and shifts it from medical floors to the intensive care unit.