Acutely Bereaved Surrogates' Stories About the Decision to Limit Life Support in the ICU

Abstract

Objectives: Participating in a decision to limit life support for a loved one in the ICU is associated with adverse mental health consequences for surrogate decision makers. We sought to describe acutely bereaved surrogates' experiences surrounding this decision.

Design: Qualitative analysis of interviews with surrogates approximately 4 weeks after a patient's death in one of six ICUs at four hospitals in Pittsburgh, PA.

Subjects: Adults who participated in decisions about life support in the ICU.

Interventions: Not applicable.

Measurements and main results: We collected participant demographics, previous advance care planning, and decision control preferences. We used qualitative content analysis of transcribed interviews to identify themes in surrogates' experiences. The 23 participants included the spouse (n = 7), child/stepchild (7), sibling (5), parent (3), or other relation (1) of the deceased patient. Their mean age was 55, 61% were women, all were whites, 74% had previous treatment preference discussions with the patient, and 43% of patients had written advance directives. Fifteen of 23 surrogates (65%) preferred an active decision-making role, 8 of 23 (35%) preferred to share responsibility with the physician, and no surrogates preferred a passive role. Surrogates report that key stressors in the ICU are the uncertainty and witnessed or empathic suffering. These factors contributed to surrogates' sense of helplessness in the ICU. Involvement in the decision to limit life support allowed surrogates to regain a sense of agency by making a decision consistent with the patient's wishes and values, counteracting surrogates' helplessness and ending the uncertainty and suffering.

Conclusions: In this all-white sample of surrogates with nonpassive decision control preferences from a single US region, participating in decision making allowed surrogates to regain control, counteract feelings of helplessness, and end their empathic suffering. Although previous research highlighted the distress caused by participation in a decision to limit life support, the act of decision making may, counterintuitively, help some surrogates cope with the experience.