Acceptability of a Serious Illness Conversation Guide to Black Americans: Results from a focus group and oncology pilot study

Abstract

Objectives Serious illness conversations (SICs) can improve the experience and well-being of patients with advanced cancer. A structured Serious Illness Conversation Guide (SICG) has been shown to improve oncology patient outcomes but was developed and tested in a predominantly White population. To help address disparities in advanced cancer care, we aimed to assess the acceptability of the SICG among African Americans with advanced cancer and their clinicians. Methods A two-phase study conducted in Charleston, SC, included focus groups to gather perspectives on the SICG in Black Americans and a single-arm pilot study of a revised SICG with surveys and qualitative exit interviews to evaluate patient and clinician perspectives. We used descriptive analysis of survey results and thematic analysis of qualitative data. Results Community-based and patient focus group participants (N = 20) reported that a simulated conversation using an adapted SICG built connection, promoted control, and fostered consideration of religious faith and family. Black patients with advanced cancer (N = 23) reported that SICG-guided conversations were acceptable, helpful, and promoted conversations with loved ones. Oncologists found conversations feasible to implement and skill-building, and also identified opportunities for training and implementation that could support meeting the needs of their patients with low health literacy. An adapted SICG includes language to assess the strength and affirm the clinician–patient relationship. Significance of results An adapted structured communication tool to facilitate SIC, the SICG, appears acceptable to Black Americans with advanced cancer and seems feasible for use by oncology clinicians working with this population. Further testing in other marginalized populations may address disparities in advanced cancer care.

Palliative Care Clinician Perspectives on Person-Centered End-of-Life Communication for Racially and Culturally Minoritized Persons with Cancer

“…These approaches include not only investigations that are centered on community needs and values but also the design of community-engaged recruitment strategies [ 53 ] and culturally-responsive interview guides [ 22 ]. Further testing of existing models is needed to evaluate efficacy of racially and culturally sensitive conversation guides that build connection, promote patient control, and consider religious faith and family values [ 29 ]; interpersonal approaches that explicitly invite and address patients’ experiences of racism while enhancing the quality of clinician-patient relationship [ 32 ]; and faith and social community engagement to improve advance care planning and EOL care communication in ways that are contextually sensitive and relevant [ 30 ].…”

“…For example, bereaved family members of Black decedents who reported better communication quality with clinicians showed lower decisional conflict during EOL care [ 28 ], which may have implications for decreasing symptoms of prolonged grief disorder. Approaches to improving communication for Black patients have included a community-based serious illness communication guide adaptation [ 29 ], partnership with local faith communities to strengthen psychosocial and spiritual support during decision-making [ 30 , 31 ], development of race-conscious serious illness communication strategies [ 32 ], communication-priming goals of care discussions for hospitalized patients, [ 33 ] and increased unconscious bias and cultural humility training [ 24 ].…”

Advance care planning as perceived by marginalized populations: Willing to engage and facing obstacles

“…Advance care planning (ACP) helps people prepare for future healthcare decisions and receive care that aligns with their goals and values [1][2][3]. Although the concept of ACP is broadly accepted and is currently being implemented in healthcare practices, ACP among marginalized populations remains low [4][5][6][7][8][9][10]. Marginalized populations are described as those who live on the margins of mainstream society [11] and "are peripheralized on the basis of their identities, associations, experiences, and environments" [12, p.25].…”

“…Although attention to ACP for different racial or ethnic groups is growing [6,9,18,[42][43][44][45][46][47][48][49], little is known about effective ways to facilitate and engage patients from marginalized populations in ACP [50]. In addition, while the effort to explore different views about ACP by different groups is valid, we question the notion of developing different ACP approaches for different racial or ethnic groups, because we believe that each person should be respected as a unique individual and should not be categorized simply by race and ethnicity.…”