Advance Care Planning With Black Women with Breast Cancer: A Community Health Worker Model

BACKGROUND: Despite the importance of advance care planning (ACP), a process that optimizes future medical treatment and end-of-life care, for at-risk populations, rates of patient-provider ACP conversations are extremely low among Black women with breast cancer. Community health workers (CHWs) are well-positioned to support patients in engaging in ACP conversations with their providers; yet research on integrating CHWs to promote ACP is scant. The current study examined multilevel facilitators and barriers to successful ACP conversations among Black women from the perspective of providers and CHWs who serve this community. METHODS: Providers and CHWs were recruited from an academic medical center in a large urban city. Retrospective qualitative data on barriers and facilitators to ACP conversations, as well as CHWs' training needs, were collected from two focus groups (N = 5 providers, N = 5 CHWs) and one individual interview (N = 1 provider), and transcribed and coded for themes. RESULTS: All providers reported working primarily with Black patients, and identified stigma and time constraints as major barriers to ACP discussions; they also identified the structural barriers and injustices that their patients face during medical care. CHWs reported having a trusted relationship with their patients and flexibility in their care that would allow for ongoing ACP conversations, discussing their ability to serve as a bridge between the patient and provider. However, CHWs discussed that they lacked the tools and skills to have ACP conversations, largely because existing formal trainings in ACP are cost prohibitive. DISCUSSION: Competing priorities of the provider to discuss/treat the patient’s disease and medical mistrust were major barriers to successful ACP conversations among Black women with breast cancer, leading to ACP completion occurring late in treatment. CHWs are uniquely qualified to overcome multilevel barriers to ACP and establish trusting relationships with patients in order to facilitate earlier and ongoing communication between patients and providers.