• Jiska Cohen-Mansfield, Michal Skornick-Bouchbinder, Rinat Cohen, and Shai Brill.
• 1 Minerva Center for the Interdisciplinary Study of End of Life, Tel-Aviv University , Tel Aviv, Israel .
• J Palliat Med. 2017 Dec 1; 20 (12): 1359-1365.

BackgroundInvestigating complaints concerning end-of-life (EoL) care is a necessary step for improving the quality of life at its final stage.ObjectiveWe aimed to classify and quantify the aspects of EoL care that require improvement by analyzing caregivers' feedback on the care their relatives received before death.DesignA survey of primary family caregivers of deceased patients.Setting/SubjectsRelatives of decedents were recruited through two geriatric medical centers and from persons contacted for other studies, who reported losing a relative. Face-to-face interviews of 70 relatives of the deceased were conducted. The participants' mean age was 64, 68.6% were female, and most (57%) were born in Israel. Regarding relationship to the deceased, 74.3% were sons/daughters, 24.3% were spouses, and one (1.4%) was a cousin.MeasuresResponses to the question "Is there something in the health system or the behavior of the doctors/nurses that you would recommend changing?" were analyzed qualitatively.Results82.9% of participants had complaints about the care received. Within this, 62.9% related to provision of services, 51.4% to communication, 27.1% to system issues, 15.7% to institutional issues, and 10.0% to staffing issues. Qualitative analysis revealed potential causal relationships between these EoL issues. We therefore propose a theoretical model involving the distal factors of system, institution, and staff that impact the proximal factors of provision of services and communication.ConclusionThe new model has the potential to clarify directions in research, quality assessment, and intervention regarding end-of-life care.

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