Redesigning a Serious Illness Conversation Guide: A Mixed-Methods Community-Engaged Revision Process

Abstract

Objective: Ariadne Labs' Serious Illness Conversation Guide provides a structured, person-centered framework for conversations about patients' values, goals, and prognosis in serious illness. The Guide has been implemented, adapted, and studied across clinical settings and patient populations. We refined the Guide to be more inclusive and accessible for diverse populations.

Methods: We employed a community-engaged iterative revision process. National experts in health equity and inter-professional clinicians across diverse clinical contexts affiliated with the Serious Illness Care Program Community of Practice (n = 59) provided feedback based on their clinical and professional experience. A group of patient and caregiver advisors affected by serious illness (n = 11 total) who identify as Black (n = 7), Latino/a (n = 1), Asian (n = 2) or mixed race (n = 1) refined and evaluated the final changes through focus groups, interviews, and a survey. A multistep rapid analysis process identified key themes and revisions to the Guide.

Results: 70 participants contributed. Major revisions were made to specific Guide sections, including the introduction, prognosis, illness understanding, and critical abilities. Other additions included a question to align around patient hopes and a prompt for clinicians to respond to emotion. Four themes that informed final modifications included: (1) The introduction should build a sense of trust and togetherness and ensure the patient has a voice and choice; (2) Sharing prognosis is a high-stakes process influenced by the therapeutic relationship, the patient's prior experience, and the language used; (3) Balancing the conversation toward positivity and hope is important to patients and caregivers; (4) Empathic communication skills build authentic connection and personalize a structured conversation. Nine of 11 patients/caregivers completed the closing acceptability survey: 8/9 strongly agreed or agreed that the revised Guide feels sensitive to their culture and identity; and 9/9 strongly disagreed or disagreed that the revised Guide was more emotionally upsetting than worthwhile.

Conclusion: Revisions of the Serious Illness Conversation Guide emphasizing hope and supporting partnership and alignment were perceived to be inclusive, emotionally safe, and acceptable for a diverse group of patient and caregiver advisors.

Keywords: Serious illness communication; community engagement; health equity; healthcare quality.