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

Abstract

BackgroundThe 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.MethodsCF 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.ResultsA 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.ConclusionsDiscrepancies 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.

Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines

“…CF care team members endorse the need for focused training in PPC skills. 8,10,22,23 Relevant PPC skills include basic pain and symptom management and communication about goals of care, prognosis, and treatment decisions. 5,9,23 Table 2 outlines examples of how different CF care team members can address the varied palliative care needs of individuals with CF.…”

“…While potential explanations for this are varied, formative data we collected from individuals with CF, caregivers, and clinicians suggest that idiosyncratic aspects of the disease render palliative care in CF to be different than in other conditions (e.g., the lifelong nature of the disease, the role of parents/guardians in care and decision making, social isolation due to infection control). [7][8][9][10] As a foundational step toward the creation of guidelines for palliative care in CF, a consensus definition of palliative care in CF was developed by key stakeholders, including individuals with CF, caregivers, CF care team members, palliative care clinicians, and researchers: ''Palliative care focuses on reducing physical and emotional symptoms and improving quality of life for people with CF throughout their lives. Palliative care occurs alongside usual treatments and is individualized according to the unique goals, hopes and values of each person with CF.''…”

Year in Review 2020: Multisystemic Impact of Cystic Fibrosis

“…Trandel et al 29 also surveyed clinicians (n=350), adults with CF (n=70) and CF caregivers (n=100) to understand perceptions of palliative care. The majority of adults with CF (64%) and caregivers (74%) were unaware if their center had palliative care programs, while only 14% of adult and 23% of pediatric clinicians were unaware.…”

Year in Review 2020: Multisystemic impact of cystic fibrosis

“…Trandel et al 29 also surveyed clinicians ( n = 350), adults with CF ( n = 70), and CF caregivers ( n = 100) to understand perceptions of palliative care. The majority of adults with CF (64%) and caregivers (74%) were unaware if their center had palliative care programs, while only 14% of adults and 23% of pediatric clinicians were unaware.…”