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Randomized Controlled Trial
. 2020 Dec;60(6):1117-1126.
doi: 10.1016/j.jpainsymman.2020.07.001. Epub 2020 Jul 6.

Surrogate Decision Maker Stress in Advance Care Planning Conversations: A Mixed-Methods Analysis From a Randomized Controlled Trial

Daniella Lipnick  1 , Michael Green  2 , Elizabeth Thiede  3 , Theresa J Smith  4 , Erik B Lehman  5 , Rhonda Johnson  4 , In Seo La  6 , Debra Wiegand  6 , Benjamin H Levi  7 , Lauren J Van Scoy  8
Affiliations
Randomized Controlled Trial

Surrogate Decision Maker Stress in Advance Care Planning Conversations: A Mixed-Methods Analysis From a Randomized Controlled Trial

Daniella Lipnick et al. J Pain Symptom Manage. 2020 Dec.

Abstract

Context: Spokespersons serving as surrogate decision makers for their loved ones report high levels of stress. Despite known benefits, advance care planning (ACP) conversations often do not occur. More information is needed to understand spokesperson stress during ACP.

Objectives: To explore if and how spokespersons perceive stress related to ACP conversations; compare factors related to stress; and assess whether ACP intervention impacted stress.

Methods: Secondary and mixed-methods analysis with data transformation of semistructured interviews occurring during a 2 × 2 factorial (four armed) randomized controlled trial that compared standard online ACP to a comprehensive online ACP decision aid. Tools were completed by patients with advanced illness (n = 285) alone or with their spokesperson (n = 285). About 200 spokesperson interviews were purposively sampled from each of the four arms (50 per arm).

Results: ACP conversations were reported as stressful by 54.41% (74 of 136) and nonstressful by 45.59% (62 of 136). Five themes impacting spokesperson stress were the nature of the relationship with their loved one; self-described personality and belief systems; knowledge and experience with illness and ACP conversations; attitude toward ACP conversations; and social support in caregiving and decision making. No significant differences in stress were associated with arm assignment.

Conclusion: Identifying what factors impact spokesperson stress in ACP conversations can be used to help design ACP interventions to more appropriately address the needs and concerns of spokespersons.

Trial registration: ClinicalTrials.gov NCT02429479.

Keywords: Surrogate decision maker; advance care planning; conversations; spokesperson; stress.

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Conflict of interest statement

Disclosure/Conflict of Interest:

Two authors, Dr. Michael Green and Dr. Benjamin Levi, are the co-creators of the decision aid, Making Your Wishes Known, which was developed for research purposes and for use free of charge. A commercial version of the decision aid called My Living Voice is owned by Vital Decisions, and Drs. Green and Levi have a financial interest in its success through a consulting arrangement with Vital Decisions. All research involving Making Your Wishes Known or My Living Voice is carefully monitored by Penn State’s Institutional Review Board and Conflict of Interest Review Committee.

Figures

Figure 1.
Figure 1.
CONSORT Flow Diagram of the Parent Trial and Purposively Sampled Participants
See this image and copyright information in PMC

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