Attuning to the Erratic End of Life: The Logic of Care in Hospice at Home

Abstract

How do dying people receive good care at home in a highly institutionalized death context? The Ministry of Health and Welfare in Taiwan, for example, has promoted hospice home care and respecting patient autonomy to improve the quality of end-of-life experiences. However, this study finds that end-of-life care is not automatically personalized or empowering for patients. From the theoretical perspective of care practices, this study accentuates the importance of family carers’ invisible work in achieving these goals for patients. Drawing from in-depth interviews and twelve months of participant observation in a medical center in northern Taiwan, the study found that family caregivers are meticulously attuned to the patient’s condition to provide care, which includes rearranging the place, coordinating resources and other carers, and practicing care. This paper reveals that the practice of hospice home care does not depend merely on the patient’s autonomy but also on the family caregivers’ and medical team’s work, which is relatively invisible within the health insurance system.