Attitudes, Experiences, and Beliefs Affecting End-of-Life Decision-Making Among Homeless Individuals

Abstract

Background: Individuals who are homeless may encounter various barriers to obtaining quality end-of-life (EOL) care, including access barriers, multiple sources of discrimination, and lack of knowledge among health care providers (HCPs) of their preferences and decisionmaking practices. Planning for death with individuals who have spent so much energy surviving requires an understanding of their experiences and preferences. Objective: This study sought to increase HCPs' awareness and understanding of homeless or similarly marginalized individuals' EOL experiences and treatment preferences. Design: Focus groups were conducted with homeless individuals using a semi-structured interview guide to elicit participants' EOL experiences, decision-making practices, and personal treatment preferences. Setting/subjects: Five focus groups were conducted with 20 inner-city homeless individuals (4 per group) at a free urban health care clinic for homeless individuals in the United States. Sixteen of the 20 participants were African American; 4 were Caucasian. None were actively psychotic. All had experienced multiple losses and drug addiction. Findings: Five main themes emerged: valuing an individual's wishes; acknowledging emotions; the primacy of religious beliefs and spiritual experience; seeking relationship-centered care; and reframing advance care planning. Conclusions: The narrative process of this qualitative study uncovered an approach to EOL decision-making in which participants' reasoning was influenced by emotions, religious beliefs, and spiritual experience. Relationship-centered care, characterized by compassion and respectful, two-way communication, was obvious by its described absence—reasons for this are discussed. Recommendations for reframing advance care planning include ways for HCPs to transform advance care planning from that of a legal document to a process of goal-setting that is grounded in human connection, respect, and understanding.