Jiska Cohen-Mansfield1,2,3, Michal Skornick-Bouchbinder1, Rinat Cohen1,3, Shai Brill1,4. 1. 1 Minerva Center for the Interdisciplinary Study of End of Life, Tel-Aviv University , Tel Aviv, Israel . 2. 2 The Herczeg Institute on Aging, Tel-Aviv University , Tel Aviv, Israel . 3. 3 Department of Health Promotion, School of Public Health, Sackler Faculty of Medicine, Tel-Aviv University , Tel Aviv, Israel . 4. 4 Beit Rivka Medical Center , Petah Tikva, Israel .
Abstract
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.
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.
Entities:
Keywords:
communication; complaints; end of life; family members; treatment
Authors: Janine Westendorp; Andrea W M Evers; Jacqueline M L Stouthard; Janneke Budding; Elsken van der Wall; Nicole M F Plum; Mirjam Velting; Anneke L Francke; Sandra van Dulmen; Tim C Olde Hartman; Liesbeth M Van Vliet Journal: Cancer Date: 2021-11-11 Impact factor: 6.921