What impact do setting and transitions have on the quality of life at the end of life and the quality of the dying process?

Abstract

Purpose: The aim of this article was to identify major research needs related to quality of life at the end of life and quality of the dying process for vulnerable older people at home, in assisted living facilities, in skilled nursing facilities, and in prisons.

Design and methods: Review and analysis of the literature was used.

Results: The science is generally weak in relationship to what is known about quality of life at the end of life and quality of dying for vulnerable older adults in different settings. Few studies address actively dying patients and the reasons for transfers between home and other settings. Existing studies are primarily anecdotal, descriptive, have small samples, and involve a single setting. Participant decisional capacity is a barrier to conducting research in these settings.

Implications: Research recommendations for each setting and across settings are provided. The National Institutes of Health should clarify criteria for enrollment of persons with diminished, fluctuating, and absent decisional capacity in research.