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.

What Counts as a Surrogate Decision?

“…The point is that we ought not simply equate surrogate decision-making with deciding/acting in a way that is consistent with that patient’s wishes. This, in conjunction with our research findings in Simmons et al 20 and Van Scoy et al 21 regarding the variability in how spokespersons interpret surrogate decision-making, led us to create a process for both exploring and adjudicating what should count as a surrogate decision, and why. In a forthcoming qualitative manuscript, we will detail how spokespersons interpreted surrogate decision-making and how this concept differed from the notion of advocacy.…”

“…In exploring this with her, she reported that the proposed treatment was really a “no-brainer” because there was “no real choice” in the matter, and therefore it did not constitute a decision at all. So, too, we found in Simmons et al 20 and Van Scoy et al 21 that spokespersons often drew little distinction between serving as an advocate for their loved one (for example, requesting that the doctor send the patient to a rehab facility rather than return home or calling 911 when their loved one was short of breath) vs acting as a surrogate decision-maker . Qualitative analysis provides evidence that family members of patients with severe chronic illness often have quite varied and overlapping perspectives on what advocacy means and how it is related to surrogate decision-making.…”

“…Here, the spokesperson’s advocacy has created the opportunity to make a surrogate decision—which may help explain why spokespersons in our study co-mingled these terms. 20 For this reason, it seems that the key issue is not how the treatment decision arose but whether there is a decision that the spokesperson is being asked to make.…”

“…Clinicians and ACP researchers generally consider a surrogate medical decision to have occurred when someone makes a treatment-related decision on behalf of the patient—which may occur because the patient has requested this, is too weak to make the decision, or lacks DMC altogether. 8 , 18 , 19 However, our research on ACP, as reported in Simmons et al 20 and Van Scoy et al, 21 has shown that family members, or others positioned to serve as the patient’s spokesperson, sometimes have a different view of what constitutes a surrogate decision. In interviews we conducted with spokespersons for patients who experienced a serious medical event, multiple spokespersons did not consider the act of telling the medical team that their loved one would have wanted to be intubated or admitted to the intensive care unit to be a surrogate decision.…”

Families’ Experiences of Surrogate Decision-Making and Challenges of Shared Decision- Making: A Cross-Sectional Study

“…Therefore, the challenge is that the surrogate can only speculate about the patient's intentions [29]. I believe that coordinating with the patient and family to discuss ACP early in the treatment initiation phase represents necessary support by healthcare professionals.…”