Attitudes, experiences, and beliefs affecting end-of-life decision-making among homeless individuals

Anita J Tarzian, Maggie T Neal, J Anne O'Neil
Journal of Palliative Medicine 2005, 8 (1): 36-48

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 decision-making 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.

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