Perspectives of Black and White Family Members on Medical Decision Making for ICU Patients

In intensive care units (ICUs), shared decision making (SDM) between clinicians and families is critical for evaluating complex tradeoffs of life-sustaining treatments and making patient-centered decisions, yet clinicians are less likely to engage in SDM with Black compared to White families.

To describe how Black compared to White family members experienced medical decision making about life-sustaining treatments for their critically ill loved ones.

This study is a thematic analysis of semi-structured, audio-recorded interviews with primary surrogate decision makers. The codebook included recommended components of SDM and known mechanisms of communication disparities. Analysts were blinded to family member race during coding; then patterns between and within racial groups were analyzed to identify themes.

Black or White primary surrogate decision makers for patients mechanically ventilated for ≥ 48 h.

Themes describing experiences of medical decision making.

In 43 interviews, both Black (n = 25, 58%) and White (n = 18, 42%) family members were middle aged (median [interquartile range, IQR]: 55 [15] years vs 58 [17] years) and had critically ill loved ones with similar lengths of ICU stay (median [IQR]: 18 [22] days vs 23 [18] days). Black family members disproportionately reported the following: (1) experiencing pressure to make decisions that aligned with the ICU team's recommendations and timeline, (2) needing to code-switch by modifying their communication and behavior to ensure their advocacy was welcomed rather than perceived as intrusive, (3) being disregarded by the medical team, which negatively impacted partnership towards shared decisions, and (4) trusting clinicians' competence but not necessarily their intentions for critically ill loved ones.

Compared to White family members, Black family members of critically ill patients experienced unique challenges relevant to SDM. These results may identify promising focus areas for future conceptual models and interventions to improve equity in ICU-based SDM.