Medical Decision-Making and Bereavement Experiences After Cardiac Arrest: Qualitative Insights From Surrogates

Background Surrogates of incapacitated patients in the intensive care unit (ICU) face decisions related to life-sustaining treatments. Decisional conflict is understudied. Objectives To compare experiences of ICU surrogates by reported level of decisional conflict related to treatment decisions after a patient’s cardiac arrest preceding death. Methods Convergent mixed methods were used. Bereaved surrogates recruited from a single northeastern US academic medical center completed surveys including the low-literacy Decisional Conflict Scale (moderate-to-high cut point >25) and individual interviews about 1 month after the patient’s death. Interview data were analyzed by directed and conventional content analysis. Surrogates were stratified by median total survey score, and interview findings were compared by decisional conflict level. Results Of 16 surrogates, 7 reported some decisional conflict (median survey score, 0; range, 0-25). About two-thirds decided to withdraw treatments. Three themes emerged from interviews: 2 reflecting decision-making experiences (“the ultimate act”; “the legacy of clinician communication”) and 1 reflecting bereavement experiences (“I wish there was a handbook”). Surrogates reporting decisional conflict included those who first pursued but later withdrew treatments after a patient’s in-hospital cardiac arrest. Surrogates with decisional conflict described suboptimal support, poor medical understanding, and lack of clarity about patients’ treatment preferences. Conclusions These findings provide insight into bereaved ICU surrogates’ experiences. The low overall survey scores may reflect retrospective measurement. Surrogates who pursued treatment were underrepresented. Novel approaches to support bereaved surrogates are warranted.