Underserved Women at End of Life: A Narrative Intervention to Improve Quality of Life (S702)

Abstract

•List strategies for the ethical inclusion of underserved patients in end-of-life research.•Identify the most pressing quality-of-life issues that affect medically underserved and low-SES patients at end of life.•Identify underserved patients' barriers to discussing end-of-life concerns with family and healthcare practitioners. The burden of cancer mortality is disproportionately borne by underserved women. What is known about the experience of the end of life (EOL) generally, including ways to improve quality of life (QOL), may not apply to underserved women. In order to develop an approach to EOL care that addresses QOL in this population, we developed and tested a patient-centered, relationship-based intervention to reduce suffering at the EOL by enhancing meaning. The study population included 55 people in 15 networks of underserved women with advanced cancer and the patients' primary informal (family/friend) caregivers, physicians, CAM practitioners, and hospice nurses. This NIH-funded study is a before-and-after, mixed-method, exploratory, community-based participatory research project. We studied women's experiences of the EOL and tested the feasibility of a narrative QOL intervention, the “ethical will”—a document that expresses an individual's values, beliefs, life lessons, hopes, love, and forgiveness. We conducted in-depth, semistructured interviews with all participants and administered visual-analog-type QOL scales pre/post intervention. We coded verbatim transcripts using qualitative thematic analysis and reconciled differences in interpretation through refined definitions and recoding. We recruited 55 participants and conducted 111 interviews. We demonstrated the feasibility of enrolling terminally ill participants, administering the intervention, and obtaining measurements as patients' health deteriorated. Of the 24 visual-analog-type QOL scales, 9 showed a change in the expected direction of 1 point or more and 6 of these were statistically significant, despite the small sample size. Thematic analysis revealed that patients' concerns regarding financial challenges are not only most salient, but also far more pressing than cancer-related health issues. Symptoms relating to psychological distress and existential concerns were more prevalent than pain and other physical symptoms in this community sample.