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

Kwak, Jung, PhD, MSW; Noh, Hyunjin, PhD, MSW

Journal of Hospice & Palliative Nursing: October 2018 - Volume 20 - Issue 5 - p 478–485
doi: 10.1097/NJH.0000000000000465
Feature Articles

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.

Jung Kwak, PhD, MSW, is associate professor, School of Nursing, The University of Texas at Austin.

Hyunjin Noh, PhD, MSW, is assistant professor, School of Social Work, The University of Alabama, Tuscaloosa.

Address correspondence to Jung Kwak, PhD, MSW, School of Nursing, The University of Texas at Austin, 1710 Red River St., Austin, TX 78701 (jkwak@nursing.utexas.edu).

The authors have no conflicts of interest to disclose.

© 2018 by The Hospice and Palliative Nurses Association.