Theory of Pivoting Uncertainties: Advance Care Planning among Individuals Living with Mechanical Circulatory Support

Abstract

Background Individuals living with mechanical circulatory support (MCS) devices are confronted with risks for catastrophic outcomes such as stroke and systemic infection. Considering these complexities, ongoing advance care planning (ACP) is important for shared decision making. Objective The purpose of this study was to describe how experiences of the MCS trajectory informed decision making about ACP. Methods All aspects of the research were guided by constructivist grounded theory. Focused conversations were conducted with a semistructured interview guide. Results A total of 24 community-dwelling patients living with MCS were interviewed (33% female; mean age, 60.6 years; 50% White). Participants were implanted with MCS (average duration, 29.8 months; bridge to transplant, 58%). Reflected in the narratives were tensions between initial expectations of living with the device in contrast with the realities that emerged over time. A crucial finding was that ACP decision making pivoted around the growing awareness of uncertainties in the MCS trajectory. Yet, clinicians were perceived to be silent in initiating ACP, and their reticence was understood as a sign of encouragement to hold on to hope for a heart transplant. The complex and dynamic decision-making processes around ACP were organized into the theory of pivoting uncertainties. Conclusions In this sample, patients were ready to share their concerns about the uncertainties of living with MCS and waited for MCS clinicians to initiate ACP. The theory of pivoting uncertainties is useful for elucidating the ebb and flow of ACP and lending clinicians' guidance for opportunities to initiate these sensitive conversations.