What Surrogates Understand (and Don't Understand) About Patients' Wishes After Engaging Advance Care Planning: A Qualitative Analysis. (April 2022)

• Record Type: Journal Article
• Authors: Simmons, David B.; Levi, Benjamin H.; Green, Michael J.; La, In Seo; Lipnick, Daniella; Smith, Theresa J.; Thiede, Elizabeth R.; Wiegand, Debra L.; Van Scoy, Lauren
• Is Part Of: American journal of hospice & palliative care. Volume 39:Number 4(2022)
• Page Start: 427
• Page End: 432
• Publication Date: 2022-04
• Subjects: advance care planning -- advanced illness -- surrogate decision making -- autonomy -- medical decision making -- advance directives; Hospice care -- Periodicals; Palliative treatment -- Periodicals; 362.175
• DOI: 10.1177/10499091211026674
• Languages: English
• ISSNs: 1049-9091

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.