Development of an Advance Care Planning Protocol in a Cystic Fibrosis Outpatient Clinic

Abstract

Background:

Advance care planning (ACP) is recommended for all patients with cystic fibrosis (CF), yet clear implementation guidelines do not exist.

Methods:

The University of North Carolina Adult CF Care Team developed a process to implement semistructured multidisciplinary outpatient ACP meetings as routine care for patients with CF. Premeeting and post-meeting surveys were used to elicit patients' attitudes toward ACP.

Results:

Twenty-seven adults with CF completed a face-to-face ACP meeting, and 13 completed both surveys. Following the multidisciplinary ACP meeting, overall scores for understanding of ACP topics improved by 4.5 points (p = 0.003).

Conclusion:

We successfully implemented sustainable ACP meetings for adults with CF and found increased comfort with ACP and documentation of wishes after ACP meetings. It is important for CF care providers to meet the needs of this patient population by ensuring that ACP is in place before crisis situations.