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The Value of Advance Care Planning for Spokespersons of Patients with Advanced Illness

      Abstract

      Context

      Advance Care Planning (ACP) has fallen under scrutiny primarily because research has not consistently demonstrated patient-focused benefits.

      Objectives

      To better understand how spokespersons regard, engage with, and find value in ACP during decision-making for their loved ones.

      Methods

      This qualitative analysis was part of a randomized controlled trial involving spokespersons of patients with advanced illness who had completed ACP. After making a medical decision on behalf of their loved one (or that loved one's death), semi-structured interviews explored spokespersons’ experience of decision-making and if (and how) ACP played a role. Thematic analysis was conducted on interview transcripts.

      Results

      From 120 interviews, five themes emerged: 1) Written advance directives (ADs) helped increase spokespersons’ confidence that decisions were aligned with patient wishes (serving as a physical reminder of previous discussions and increasing clarity during decision-making and family conflict); 2) Iterative discussions involving ACP facilitated “In the moment” decision-making; 3) ADs and ACP conversations helped spokespersons feel more prepared for future decisions; 4) Spokespersons sometimes felt there was “no choice” regarding their loved one's medical care; and 5) Regrets and second-guessing were the most common negative emotions experienced by spokespersons.

      Conclusion

      Considering the recent debate about the utility of ACP and ADs, this analysis highlights the value of ACP for spokespersons involved in surrogate decision-making. Reframing the goals of ACP in terms of their benefit for spokespersons (and identifying appropriate outcome measures) may provide additional perspective on the utility of ACP.

      Keywords

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