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

David B. Simmons, Benjamin H. Levi, Michael J. Green, In Seo La, Daniella Lipnick, Theresa J. Smith, Elizabeth R. Thiede, Debra L. Wiegand, Lauren Van Scoy

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
JournalAmerican Journal of Hospice and Palliative Medicine
DOIs
StateAccepted/In press - 2021

All Science Journal Classification (ASJC) codes

  • Medicine(all)

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