Chen E, et al. - A national retrospective chart review was performed in order to explore end-of-life practice patterns at U.S. adult cystic fibrosis (CF) care centers. It was observed in the findings that adults dying with CF in the United States most commonly die in an intensive care unit (ICU), with limited and variable use of hospice and Palliative Care Services. Therefore, palliative care and advance care planning were advised as a routine part of CF care.

Methods

• For the purpose of this study, chart abstraction was utilized to analyze end-of-life care (EOLC) in adults with CF who died between 2011 and 2013.

Results

• Two hundred forty-eight deaths from 71 CF care centers were reviewed.
• It was found that median age at death was 29 years (range 18–73).
• Results revealed that 38% had mild or moderate lung disease in the year preceding death while median FEV1 was in the severe lung disease category (FEV1 < 40%).
• The intensive care unit (ICU, 39%) was the most common location of death, and 12% of decedents were listed for lung transplant.
• Fewer of those dying in the ICU personally partook in advance care planning or utilized hospice or Palliative Care Services (p < 0.05).