I Don't Want to Be the One Saying 'We Should Just Let Him Die': Intrapersonal Tensions Experienced by Surrogate Decision Makers in the ICU

BACKGROUND: Although numerous studies have addressed external factors associated with difficulty in surrogate decision making, intrapersonal sources of tension are an important element of decision making that have received little attention. OBJECTIVE: To characterize key intrapersonal tensions experienced by surrogate decision makers in the intensive care unit (ICU), and explore associated coping strategies. DESIGN: Qualitative interview study. PARTICIPANTS: Thirty surrogates from five ICUs at two hospitals in Pittsburgh, Pennsylvania, who were actively involved in making life-sustaining treatment decisions for a critically ill loved one. APPROACH: We conducted in-depth, semi-structured interviews with surrogates, focused on intrapersonal tensions, role challenges, and coping strategies. We analyzed transcripts using constant comparative methods. KEY RESULTS: Surrogates experience significant emotional conflict between the desire to act in accordance with their loved one's values and 1) not wanting to feel responsible for a loved one's death, 2) a desire to pursue any chance of recovery, and 3) the need to preserve family well-being. Associated coping strategies included 1) recalling previous discussions with a loved one, 2) sharing decisions with family members, 3) delaying or deferring decision making, 4) spiritual/religious practices, and 5) story-telling. CONCLUSIONS: Surrogates' struggle to reconcile personal and family emotional needs with their loved ones' wishes, and utilize common coping strategies to combat intrapersonal tensions. These data suggest reasons surrogates may struggle to follow a strict substituted judgment standard. They also suggest ways clinicians may improve decision making, including attending to surrogates' emotions, facilitating family decision making, and eliciting potential emotional conflicts and spiritual needs.