Using Experience-Based Co-Design With Resident-Physicians and Black Community Members to Enhance Goals-of-Care Conversation Skills Training: Findings and Methodological Modifications

Background: Black patients in the US face significant disparities in palliative care, including experiences of goals of care conversations. Aim: The purpose of this study was to describe and appraise an experience-based co-design study grounded in cultural humility, conducted to enhance goals of care communication skills training to better serve Black patients in the US. Design, Setting, Participants: A pilot, modified experience-based co-design study using focus groups and interviews was conducted with five internal medicine resident physicians and five Black care partners to understand their experiences of goals of care conversations. Data were analyzed using reflexive thematic analysis. Participants then joined a co-design workshop to validate findings and identify shared priorities for improving goals of care conversation training. Methodology was modified in response to COVID-19 and racial humility. Results: The shared priorities from residents’ themes were: 1) The need for humility regardless of personal experiences; 2) Reflection on the medical drivers/forces and their impact on practice before every interaction; and 3) Self-reflection on personal identity prior to interactions: the subconscious impact and affinity of race. Shared priorities from care partners’ themes were: 1) Having an advocate is part of high-quality care; 2) Compassionate treatment of the patient/care partner as a human being; and 3) Health equity and access to care. Conclusion: The flexible framework, experiential focus, and need for reflective practice made experience-based co-design a well-suited methodology for exploring how to enhance goals of care conversation skills training. This work highlights the importance of the way care is provided, and that the presence of additional advocacy personnel can help address disparities in palliative care for Black patients in the United States.