Dataset for: "Falling leaves return to their roots": families’ experiences of decision-making when transferring patients home to die from an intensive care unit in China

Abstract

Background: Transferring patients home to die from critical care remains an unusual event in Western healthcare systems, but is more usual in China. Despite this very little is known about the transfer decision-making and families’ experiences of transfer in China. Aims: This study sought to understand families’ experiences of decision-making when transferring home patients to die from intensive care units in China, focusing on the decision-making processes, the decision-makers, their information and support needs, barriers to, and facilitators of transfer, and meaning making of their experiences. Methods: A constructivist qualitative study methodology was adopted. Interviews were undertaken with thirteen family members sharing their experiences of transferring ten patients’ home to die from one intensive care unit in mainland China. Data analysis followed the thematic process outlined by Braun and Clarke and generated four themes (“Stay here or go home?”: two steps to decide transfer; “His sons discussed and others were not involved”: the decision-makers in the process of deciding to transfer; “Falling leaves return to their roots”: the meaning making of transfer; and “It’s a gap in the care”: the unmet information and support needs) and one overarching theme (“Nowhere else to go”: a single path towards a home death through a web if power). Findings: Transfer decision-making by family members progressed through two steps: accepting the inevitable death and transferring home to die. The decision-making process was driven by Chinese cultural values and norms about a home death which obligates family members to achieve this outcome despite the lack of transit and home care services. Transferring home to die in China was a family-led decision-making process with limited choices and little support pre, during, and post transfer, and was informed by a web of interrelated and conflicted power. ards a home death through a web of power). Conclusion: Family members have limited choices regarding place of death for relatives due to the unique societal culture and healthcare system in China. Powerful cultural drivers and expectations of a home death were identified as factors that obstruct service development which would provide meaningful end of life care choices for family members in China. A lack of choice of transfer decisions reflects inadequate end of life service provision in China. Findings of this study suggest the need to develop end of life care provision in China, including transfer services. This would improve both support for family members and the death and dying experience for people in China.