Barriers to Palliative Care in Cystic Fibrosis (S863)

Abstract

1.Identify barriers to palliative care for individuals with cystic fibrosis from the perspectives of patients, caregivers, and CF providers.2.Describe ways to overcome barriers to palliative care in cystic fibrosis. In the absence of clear guidelines for palliative care (PC) in cystic fibrosis (CF), little is known about PC provision to individuals with CF and barriers to PC. To identify barriers to PC in CF. CF care team members (“providers”), adults with CF (“patients”), and family caregivers (“caregivers”) recruited from listservs maintained by the Cystic Fibrosis Foundation completed an online survey about barriers to PC in CF. Responses were analyzed using descriptive statistics. Surveys were completed by 70 patients, 100 caregivers, and 350 providers. All providers and 96% of patients and caregivers expressed beliefs that PC is valuable for individuals with CF. Nearly half of patients and caregivers recalled knowing someone who received PC, but rarely had personal experience. While 73% of providers reported introducing PC to patients, only 26% of patients and 12% of caregivers recalled learning about PC from providers. From a list of common barriers to PC, all groups identified the same top three: perception that palliative care is only for dying people, lack of access to outpatient PC, and lack of PC training for CF providers. Nearly 1/3 of providers felt patient reluctance to engage in PC conversations is an important barrier, versus 5% of patients and caregivers. Many patients (64%) and caregivers (74%) were not aware of availability of PC specialists, and 19% of providers did not know if PC specialists were available to their patients. Patients with CF and caregivers report little experience with PC despite a majority of providers reporting they introduce PC to their patients. The most common barriers to PC reflect gaps in knowledge and provider concerns about patient willingness to engage in PC conversations.