Treatment and communication-that is what matters: An analysis of complaints regarding end-of-life care

Background: Investigating complaints concerning end-of-life (EoL) care is a necessary step for improving the quality of life at its final stage. Objective: We 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. Design: A survey of primary family caregivers of deceased patients. Setting/Subjects: Relatives 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. Measures: Responses 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. Results: 82.9% 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. Conclusion: The new model has the potential to clarify directions in research, quality assessment, and intervention regarding end-of-life care.