Family caregivers’ administration of medications at the end-of-life in China: a qualitative study

Abstract

BackgroundEffective medication management is crucial for ensuring timely pain and symptom control at the end of life. Dying in pain is a major concern for patients, yet some find less effective pain control at home. Family caregivers (FCGs) play a vital role in managing pain and symptom control for dying patients. However, the experience of administering medications at home for terminal-stage patients has not been widely recognized or understood. Our study aimed to explore the experiences of FCGs in administering medications to adult dying patients.MethodsWe conducted a directed content analysis of data from 73 semi-structured interviews with FCGs across 19 Chinese provinces from 2021 to 2023. FCGs were recruited through the Voluntary Cooperative Network Research. We asked, “Could you recall the end-of-life care process for the patients?” We aligned the themes with the five issues identified by Wilson et al. (2018): administration, organizational skills, empowerment, relationships, and support.ResultsFCGs in China exhibit concerns about over-engagement and empowerment in medication administration, concealing medication information from the patient, and medication accessibility. FCGs faced significant challenges in accurately identifying and addressing pain and symptoms, determining appropriate dosages, accessing effective medications, and managing the emotional stress associated with potential medication errors. Financial burden, medication regulatory restrictions, geographical inequality, and travel restrictions during COVID impeded patients and FCGs from accessing medication. A culturally specific finding is the use of alternative medicine at the end of life.ConclusionOur findings build upon Wilson et al.‘s framework and extend their insights on empowerment, highlighting the need for policies to support home-based palliative care professionals in training FCGs for effective medication administration.