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

Objective: 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.

Methods: 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.

Results: 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.

Conclusions: Chinese sociocultural values and beliefs about caregiving and death provide insightful explanations for the observed process.

Practical Implications: 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.