Structural Barriers to Well-grounded Advance Care Planning for the Seriously Ill: a Qualitative Study of Clinicians’ and Administrators’ Experiences During a Pragmatic Trial

Background Advance Care Planning (ACP) comprises an iterative communication process aimed at understanding patients’ goals, values, and preferences in the context of considering and preparing for future medical treatments and decision making in serious illness. The COVID pandemic heightened patients’ and clinicians’ awareness of the need for ACP. Objective Our goal was to explore the experiences of clinicians and administrators in the context of an intervention to improve ACP during the COVID pandemic. Design Qualitative interview study. Participants Clinicians and administrators across five sites that participated in the ACP-COVID trial. Approach We conducted semi-structured, qualitative interviews examining the context and approach to ACP. Interviews were analyzed using template analysis to systematically organize the data and facilitate review across the categories and participants. Templates were developed with iterative input and line-by-line review by the analytic team, to reach consensus. Findings were then organized into emergent themes. Key Results Across 20 interviews (4 administrators, 16 clinicians) we identified three themes related to how participants thought about ACP: (1) clinicians have varying views of what constitutes ACP; (2) the health system critically shapes ACP culture and norms; and (3) the centrality of clinicians’ affective experience and own needs related to ACP. Varying approaches to ACP include a forms-focused approach; a discussion-based approach; and a parental approach. System features that shape ACP norms are (1) the primacy of clinician productivity measures; (2) the role of the EHR; and (3) the culture of quality improvement. Conclusions Despite high organizational commitment to ACP, we found that the health system channeled clinicians’ ACP efforts narrowly on completion of forms, in tension with the ideal of well-grounded ACP. This resulted in a state of moral distress that risks undermining confidence in the process of ACP and may increase risk of harm for patients, family/caregivers, and providers. Trial Registration ClinicalTrials.gov Identifier: NCT04660422.