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

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: 1) explore if and how spokespersons perceive stress related to ACP conversations; 2) compare factors related to stress; and 3) assess whether ACP intervention impacted stress. Methods Secondary, mixed methods analysis with data transformation of semi-structured interviews occurring during a 2x2 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). 200 spokesperson interviews were purposively sampled from each of the 4 arms (50 per arm). Results ACP conversations were reported as stressful by 54.41% (74/136), and non-stressful by 45.59% (62/136). Five themes impacting spokesperson stress were: ( 1 ) the nature of the relationship with their loved one, ( 2 ) self-described personality and belief systems, ( 3 ) knowledge and experience with illness and ACP conversations, ( 4 ) attitude toward ACP conversations, and ( 5 ) 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.