What Matters to Persons With Dementia at the End of Life: Perspectives of Proxy Decision Makers.

Abstract

For substituted decision makers for the growing number of persons with dementia (PWDs), understanding the PWD's values is a prerequisite for making end-of-life (EOL) decisions congruent with the PWD's wishes. The current qualitative study explored PWD health care proxies' perspectives on values that are important to PWDs at end of life and challenges in making EOL decisions that reflect PWDs' values. Semistructured interviews were conducted with 20 PWD proxies, and data were analyzed using the content analysis, an inductive approach to identify themes. Three main themes emerged: (1) what matters to PWDs at end of life, (2) uncertainty about the PWD's current wishes and EOL trajectory poses challenges, and (3) the role of health care professionals' empathic and clear communication. Together, these findings suggest proxies' efforts to understand and respect PWDs' wishes at end of life and communication strategies that health care providers can use to help PWD proxies cope with uncertainty and challenges in EOL decision making.