Redesigning a Serious Illness Conversation Guide to Center Equity: A Community-Engaged Qualitative Process

Outcomes 1. Through didactic lecture, participants will be able to identify the revisions in the Serious Illness Conversation Guide, the rationale for the changes, and how they relate to diversity and equity.2. Through didactic lecture and discussion, participants will identify how they could use the new Guide, or questions from it, in their practice, particularly with patients and family/caregivers from underrepresented or marginalized communities. Key Message To make the Serious Illness Conversation Guide more acceptable and inclusive for marginalized communities, we involved over 100 experts, clinicians, patients, and family caregivers in an iterative user-centered revision process. Multiple changes were proposed and the final Guide, more balanced in hope and positivity, was rated favorably by a panel of seriously ill patients from Black, Latino, and Asian communities. Introduction/Context Ariadne Labs’ Serious Illness Conversation Guide has been adapted, implemented, and studied across many patient populations and clinical contexts worldwide. Clinicians serving marginalized communities have reported that changes are needed to make the Guide more suitable for their patients. Objectives to refine and improve the Serious Illness Conversation Guide to be more inclusive and acceptable for diverse populations. Methods We employed a user-centered multi-step iterative revision process emphasizing diverse stakeholder input. Data included a mixture of focus groups, individual interviews, and surveys from the following sources: a virtual convening of 35 serious illness and diversity experts; webinars to elicit input from 105 program experts, clinicians, and patient/caregiver advocates from the SICP Community of Practice; and a panel of 11 Black, Latino, and Asian seriously ill patients and caregivers. We performed a multi-step rapid analysis process to identify key-themes and revisions to the Guide. Results Using participant surveys to create ‘heat maps’, we identified areas of the Guide that needed the most attention. One or more revisions were made to these Guide elements: introducing the conversation; eliciting patient understanding of illness; talking about uncertain or functional prognosis; and asking about critical abilities. An element was added to ask about and align around hope. Nine out of 11 patient or caregiver participants completed a closing acceptability survey evaluating the revised Guide. All 9 strongly agreed that the Guide includes questions that are important to discuss with their clinician(s) and caregiver(s) and 8/9 strongly agreed or agreed (one neither agreed nor disagreed) that the Guide feels sensitive to their culture and identity. Conclusion While it's not possible to make a conversation guide ideal for everyone, we were able to make the Guide more acceptable and inclusive for diverse patients and caregivers, largely by including more room for hope and positivity. Keywords Communication / Diversity, Equity, Inclusion, Belonging, Justice