Factors Influencing Quality of Life at the End of Life in Mainland China

Background: Achieving a good death is a goal of modern health care. Various individual and societal factors can influence the quality of life (QoL) at the end of life (EoL). Those factors, however, were mainly examined in the U.S. and Europe, while studies on EoL QoL in Eastern culture are scarce. This study examined factors that are associated with the quality of dying and death and the family burden concern with a sample of China’s older adults. We hypothesized that social support and caregiving, the place of death, and advance care planning would be associated with the quality of dying and death and the family burden concern.

Methods: The post-mortality survey used for this study was from the Longitudinal Study of Rural Elder’s Well-Being in Anhui Province, China. A stratified multistage sampling method was used to select participants for the parent study. The post-mortality survey examined deaths that occurred between 2012 and 2015 by probing decedents’ family members or friends. A total of 115 surveys were included in the analysis. The quality of dying and death and the family burden concern were measured using items from the Quality of Dying and Death questionnaire, inquiring the frequencies of the physical and psychological activities. Multiple regression and data reduction strategy were conducted to analyze the data.

Results: In this sample, the quality of dying and death was positively correlated with the family burden concern. Social support and caregiving -- time spent with children, time spent with other relatives and friends, and personal care were associated with higher quality of dying and death (p<.05), with time spent with other relatives and friends being a significant predictor of quality of dying and death in the regression model. Dying in an institution was associated with lower quality of dying and death (p<.05). There were trends that dying at other people’s homes (relative to one’s own home) and living with others prior to death (relative to living alone) were associated with higher family burden concern (p<.1). Advance care planning was not observed to be a predictor of EoL QoL. Two models explained 16.1% and 14.7% of variance respectively. The vast majority of variance, however, remained unexplained.

Implications: Findings suggest that Chinese older adults might experience an internal struggle between being cared for by families to gain comfort and the concern of burdening the family. Consistent with the literature, social support and caregiving provides physical and psychological comfort to patients at the EoL, and the place of death is important to consider in order to help patients achieve a good death. Future research should examine other factors that influence EoL QoL, and include qualitative studies to inquire the patient and family’s cognitive process and interactions to obtain a better understanding of dying and death in Chinese culture. The study suggests great potential for developing and promoting innovative EoL care models in China (e.g., hospice and palliative care), in order to increase older adults and family’s EoL comfort while decreasing family’s burden and patients’ concerns.