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


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.


CONCLUSIONS
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.
Mezey
Mathy
M
Division of Nursing, Steinhardt School of Education, New York University, New York, NY 10003-6677, USA. mm5@nyu.edu
Dubler
Nancy Neveloff
NN
Mitty
Ethel
E
Brody
Abraham Aizer
AA
D000368:Aged; D040561:Assisted Living Facilities / Q000592:standards; D006302:Health Services Research; D006701:Home Nursing / Q000592:standards; D006801:Humans; D011330:Prisons / Q000592:standards; D036301:Qualitative Research; D011787:Quality of Health Care; D011788:Quality of Life; D012866:Skilled Nursing Facilities / Q000592:standards; D013727:Terminal Care / Q000592:standards*