Palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members

• Authors: Elizabeth T Trandel, University of Pittsburgh; Dio Kavalieratos, Emory University; Melissa Basile, Northwell Health, Manhasset; Mara R Hobler, University of Washington; Anna M Georgiopoulos, Massachusetts General Hospital; Elaine Chen, Rush University; Jessica L Goggin, University of California San Diego; Christopher H Goss, University of Washington; Sarah E Hempstead, Cystic Fibrosis Foundation, Bethesda; Albert Faro, Cystic Fibrosis Foundation, Bethesda; Elisabeth P Dellon, University of North Carolina
• Journal Title: PEDIATRIC PULMONOLOGY
• Volume: Volume 55, Number 8
• Publisher: WILEY | 2020-05-08, Pages 2017-2024
• Type of Work: Article | Post-print: After Peer Review
• Publisher DOI: http://doi.org/10.1002/ppul.24806
• Subjects: Health Sciences, Medicine and Surgery; Health Sciences, Mental Health
• Keywords: Science & Technology; Life Sciences & Biomedicine; Pediatrics; Respiratory System; cystic fibrosis; palliative care; social dimensions of pulmonary medicine; CYSTIC-FIBROSIS FOUNDATION; AMERICAN SOCIETY; MENTAL-HEALTH; LIFE CARE; END; BURDEN; INTEGRATION; CHALLENGES; DEPRESSION

Abstract

Background: The role of cystic fibrosis (CF) care team members in delivering palliative care (PC) remains undefined. We aimed to understand the PC skills of CF care teams. Methods: CF care team members (“clinicians”), adults with CF (“patients”), and family caregivers (“caregivers”) rated the ability of CF clinicians to provide aspects of PC using a five-point scale (“poor” to “excellent”). Median ratings were compared between groups. Results: A total of 70 patients, 100 caregivers, and 350 clinicians participated. Clinicians consistently rated their PC skills higher than patients or caregivers rated them, particularly for advanced PC skills. While clinicians, patients, and caregivers rated clinicians as “very good” at basic pain assessment and “good” at discussing prognostic uncertainty, clinicians rated themselves more highly at providing most skills, including simultaneous PC and standard CF care (P <.0001), basic depression assessment (P <.001), and discussing transplant, advance directives, end of life, code status, and hospice (all P <.0001). Respondents affiliated with adult CF care teams rated clinicians more highly than respondents affiliated with pediatric CF care teams at discussing lung transplant (P <.001), end of life (P =.006), advance directives (P <.001), code status (P =.012), and hospice (P =.016). Most patients (69%) and caregivers (60%) felt CF clinicians should receive more PC training. Conclusions: Discrepancies exist among patient/caregiver and clinician perceptions of PC skills in CF, and skills of adult and pediatric teams may differ. Patients and caregivers feel clinicians’ more advanced PC skills are lacking. CF clinicians may benefit from PC training to enhance skills and to understand how and when to utilize specialty PC services.