Neurology clinicians' views on palliative care communication: "How do you frame this?". Neurol Clin Pract 2020 Dec;10(6):527-534
Date
02/02/2021Pubmed ID
33520415Pubmed Central ID
PMC7837442DOI
10.1212/CPJ.0000000000000794Scopus ID
2-s2.0-85113317524 (requires institutional sign-in at Scopus site) 9 CitationsAbstract
BACKGROUND: The communication process of preparing patients and families facing progressive neurodegenerative diseases for future illness has not been empirically elucidated; the goal of this qualitative study was to explore neurology interdisciplinary health professionals' communication experiences, including current approaches, facilitators, and challenges.
METHODS: Three focus groups were conducted with 22 clinicians representing a range of health professions from several multidisciplinary neurology outpatient clinics at a large academic medical center. A thematic analysis approach was used to develop a coding structure and identify overarching themes.
RESULTS: Neurology clinicians highlighted that in their practice, (1) conversations are triggered by acute events and practical needs; (2) conversations occur routinely but are rarely documented; (3) loss of patient capacity and resultant surrogate decision-making can be ethically fraught, especially in times of family conflict; (4) prognostic uncertainty, unfamiliarity with disease trajectories, and patient or surrogate avoidance pose communication challenges; and (5) generalist- and specialty-level palliative care roles should be better defined.
CONCLUSIONS: There is a need for a systematic, structured approach to communication that can be applied early in the disease trajectory and considered when developing integrated neuro-palliative care programs.