Black Surrogate Decision Makers’ Perspectives on American Thoracic Society and Society of Critical Care Medicine Policy Statement on Shared Decision Making in Intensive Care Units

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Abstract Rationale: The American Thoracic Society (ATS) and Society for Critical Care Medicine (SCCM) published a policy statement recommending communication skills to improve how clinicians support surrogate decision makers in the ICU, which was based on expert opinion.1 These recommendations have not been assessed by surrogate decision makers, including Black individuals, a group with well-documented disparities in health care. We sought to elicit the perspectives of Black individuals with prior experience as surrogates on the ATS/SCCM policy statement. Methods: We convened focus groups with individuals who have served as surrogate decision makers and identify as Black. Race concordant, PhD-trained facilitators conducted the focus groups, first exploring participants’ prior experiences as a surrogate, then presenting a summary of the core elements of the ATS/SCCM policy statement and eliciting their opinions about the recommendations. We used an inductive thematic analysis approach to develop the coding framework. We double coded interviews and resolved discrepancies by consensus. Results: We conducted three focus groups with a total of 20 participants via Zoom (mean age 51.7; 85% female) who served as surrogates for spouses (1), children (11), siblings (3), extended family (4), and others (1). Participants described negative experiences communicating with doctors attributed to racial biases and clinicians’ communication skills (e.g., seeming indifferent, unwilling or unable to fully engage with surrogates). Although participants broadly endorsed the key recommendations in the policy statement, they offered numerous suggestions to improve them (see Table 1) including 1) broadening the recommendations to apply to the whole interprofessional clinical team 2) being receptive and responsive to the communication priorities of families; 3) allowing family more time and space to process information and emotions; 4) presenting all medically reasonable treatment options; 5) centering the family's concept of what is best for the patient; 6) including the entire family in decision making, if preferred. Conclusions: Although participants generally endorsed the main recommendations in the ATS-SCCM policy statement on shared decision making in ICUs, they highlighted numerous areas for refinement, including increasing the focus on interprofessional collaboration to support families, allowing more time for processing information, centering family expertise, and presenting medically reasonable treatment options, rather than solely the clinicians’ preferred option. These perspectives from Black surrogates should inform future revisions to the ATS/SCCM policy recommendations and also to how clinicians support surrogates in ICUs. 1 Kon AA et al. Shared Decision Making in ICUs: An SCCM and ATS Policy Statement. Crit Care Med. 2016;44(1):188-201. doi:10.1097/CCM.0000000000001396

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