Journey to inpatient hospice care: A qualitative study on the decision-making process of Chinese family caregivers of persons with terminal cancer.

Abstract

To understand family caregivers' decision-making process to place their family members with terminal cancer in inpatient hospice care, especially in the social-cultural contexts whereby the caregivers have a dominant say about the care of their seriously ill family members. A qualitative study with a phenomenological approach was undertaken to understand the lived experience of caregivers of persons with terminal cancer in the decision-making process. Semi-structured qualitative interviews were conducted with a purposive sample of 17 caregivers in Shanghai, China. Thematic analysis was used to analyze the data. The caregivers underwent a winding and socioculturally mediated four-stage process. The stages are (i) trigger for alternatives: lost hope for a cure, (ii) meandering the see-saw process, (iii) the last straws: physical limitations and witnessing unbearable suffering, and (iv) the aftermath: acceptance versus lingering hope. Caregivers' attitudes towards death and their family members with advanced cancer expressed care wishes influence the state of the aftermath. Chinese sociocultural values and beliefs about caregiving and death provide insightful explanations for the observed process. Training healthcare professionals in cultural competence, developing an effective hospice referral system, and delivering socioculturally acceptable death education are critical interventions to facilitate better decision-making experiences.