What Surrogates Understand (and Don’t Understand) About Patients’ Wishes After Engaging Advance Care Planning: A Qualitative Analysis

Abstract

Background: The goal of advance care planning (ACP) is to improve end-of-life decision-making for patients and their spokespersons, but multiple studies have failed to show substantial or consistent benefit from ACP. Understanding how and why ACP under-performs in the setting of complex medical decision-making is key to optimizing current, or designing new, ACP interventions. Aim: To explore how ACP did or did not contribute to a spokespersons’ understanding of patient wishes after engaging in ACP. Design: Thematic analysis of 200 purposively sampled interviews from a randomized control trial of an ACP decision aid. Setting/Participants: 200 dyads consisting of patients 18 years or older with advanced serious illness and their spokesperson at 2 tertiary care centers in Hershey, PA and Boston, MA. Participants were interviewed 1 month after completing ACP. Results: ACP helped participants: 1) express clear end-of-life wishes, 2) clarify values, and 3) recognize challenges associated with applying those wishes in complex situations. Shortcomings of ACP included 1) unknown prognostic information or quality-of-life outcomes to inform decision-making, 2) skepticism about patients’ wishes, and 3) complicated emotions impacting end-of-life discussions. Conclusions: Helping patients and their spokespersons better anticipate decision-making in the face of prognostic and informational uncertainty as well as the emotional complexities of making medical decisions may improve the efficacy of ACP interventions.