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.
Key Words
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Article info
Publication history
Published online: January 20, 2023
Accepted:
December 27,
2022
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2023 Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine.
