End-of-Life Concerns and Experiences of Living With Advanced Breast Cancer Among Medically Underserved Women

Context. Breast cancer morbidity and mortality disproportionately affect medically underserved women. Most studies of the experience of living with advanced breast cancer do not focus on this population. A deeper understanding of racial/ethnic minorities' and low-income patients' experiences is needed to reduce breast cancer health and health care disparities. Objectives. This qualitative, community-based participatory research study explores the lived experiences of medically underserved women with advanced breast cancer. Methods. We conducted in-depth, semistructured interviews with low-income patients from a community clinic and safety-net hospital, focusing on issues related to advanced breast cancer and end of life. Six team members independently coded transcripts, jointly reconciled coding differences, and identified key themes. Results. All 63 participants (83% response rate) had an income <= 200% of the federal poverty level; 68% identified as a racial/ethnic minority. Four predominant themes emerged: compounding of pre-existing financial distress, perceived bias/lack of confidence in medical care received, balancing personal needs with the needs of others, and enhanced engagement with sources of life meaning. Conclusion. Participants resiliently maintained engaged lives yet described extreme financial duress and perceived provider bias, which are known contributors to worse quality of life and health outcomes. Participants downplayed their desire to discuss dying to accommodate pressure to "stay positive'' and to mitigate others' discomfort. Improving care for underserved women with advanced cancer will require addressing disparities from screening through hospice, developing personalized opportunities to discuss death and dying, and enhancing access to and affordability of medical and social support. Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine.