"Don't talk to them about goals of care": Understanding disparities in advance care planning
Division of Epidemiology, Department of Population and Quantitative Health Sciences
Geriatrics | Gerontology | Health Services Administration | Palliative Care | Primary Care | Race and Ethnicity
BACKGROUND: Structurally marginalized groups experience disproportionately low rates of advance care planning (ACP). To improve equitable patient-centered end-of-life care, we examine barriers and facilitators to ACP among clinicians as they are central participants in these discussions.
METHODS: In this national study, we conducted semi-structured interviews with purposively selected clinicians from six diverse health systems between August 2018 and June 2019. Thematic analysis yielded themes characterizing clinicians' perceptions of barriers and facilitators to ACP among patients, and patient-centered ways of overcoming them.
RESULTS: Among 74 participants, 49 (66.2%) were physicians, 16.2% were nurses, and 13.5% were social workers. Most worked in primary care (35.1%), geriatrics (21.1%), and palliative care (19.3%) settings. Clinicians most frequently expressed difficulty discussing ACP with certain racial and ethnic groups (African American, Hispanic, Asian, and Native American) (31.1%), non-native English speakers (24.3%), and those with certain religious beliefs (Catholic, Orthodox Jewish, and Muslim) (13.5%). Clinicians were more likely to attribute barriers to ACP completion to patients (62.2%), than to clinicians (35.1%) or health systems (37.8%). Three themes characterized clinicians' difficulty approaching ACP (Preconceived views of patients' preferences; narrow definitions of successful ACP; lacking institutional resources), while the final theme illustrated facilitators to ACP (Acknowledging bias and rejecting stereotypes; mission-driven focus on ACP; acceptance of all preferences).
CONCLUSIONS: Most clinicians avoided ACP with certain racial and ethnic groups, those with limited English fluency, and persons with certain religious beliefs. Our findings provide evidence to support development of clinician-level and institutional-level interventions and to reduce disparities in ACP.
disparities, end of life, ethnicity, implicit bias, patient-centered, race
DOI of Published Version
Ashana DC, D'Arcangelo N, Gazarian PK, Gupta A, Perez S, Reich AJ, Tjia J, Halpern SD, Weissman JS, Ladin K. "Don't talk to them about goals of care": Understanding disparities in advance care planning. J Gerontol A Biol Sci Med Sci. 2021 Mar 29:glab091. doi: 10.1093/gerona/glab091. Epub ahead of print. PMID: 33780534. Link to article on publisher's site
The journals of gerontology. Series A, Biological sciences and medical sciences
Ashana DC, D'Arcangelo N, Gazarian PK, Gupta A, Perez S, Reich AJ, Tjia J, Halpern SD, Weissman JS, Ladin K. (2021). "Don't talk to them about goals of care": Understanding disparities in advance care planning. University of Massachusetts Medical School Faculty Publications. https://doi.org/10.1093/gerona/glab091. Retrieved from https://escholarship.umassmed.edu/faculty_pubs/1969