The dilemma of surrogate decision-making in the intensive care unit: A focused ethnographic study

Abstract

Background

Shared decision-making (SDM) requires bidirectional communication between medical staff and patients (or their surrogates) to ensure treatment aligns with patients’ values and preferences. In the intensive care unit (ICU), critically ill patients often lose decision-making capacity, placing surrogate decision-making responsibilities on family members. However, surrogates face significant challenges due to restricted information access, communication barriers, and decision-making delays. The impact of ICU spatial isolation, restricted visitation policies (RVP), and information flow on the decision-making process remain underexplored. This study examines how these factors shape surrogate decision-making and affect its effectiveness.

Methods

A focused ethnographic study was conducted in the ICU of a tertiary hospital in China over 6 months. Data were collected through participant observation and semi-structured interviews with 9 ICU physicians, 6 nurses, and 10 family surrogates. Thematic content analysis was used to systematically code and synthesize data, identifying key challenges within the ICU decision-making ecosystem.

Results

ICU spatial isolation and RVP placed surrogates at the periphery of the information network, where they receive only fragmented and unidirectional updates. Medical staff predominantly relied on one-way, ad-hoc communication, preventing surrogates from fully understanding patient conditions. Additionally, discussions often neglected patients’ values, impeding substituted judgment. The resulting information deficit led surrogates to seek external sources, exacerbating trust issues with medical staff. This dual-layered isolation—spatial and informational—and distrust increased the influence of non-medical factors such as financial constraints, emotional distress, and sociocultural pressures, potentially leading to decisions misaligned with patient interests. The study proposes a staged visitation and structured communication model to address these challenges and enhance surrogate decision-making quality.

Conclusions

Future research should assess the effectiveness of this model and explore strategies to balance ICU staff workload with surrogate informational needs in high-stress environments.

Ethical considerations

The study was approved by the Institutional Review Board of Dalian Medical University (Approval No. BECDMU 2024-008). Written informed consent was obtained from all formal interview participants, while oral informed consent was secured for ethnographic observations. Confidentiality and anonymity were strictly maintained.