Hearing, sharing and applying: a qualitative study of the experiences of family caregivers’ end-of-life decision-making in Singapore

Abstract

Objectives This study aims to describe the caregivers’ end-of-life (EOL) decision-making experience, what made family caregivers feel assured when they were making the right call, and when they felt uncertain or regretful about decisions made. The objective is to describe the decision-making journey and identify how interventions can be developed for these caregivers.Methods Semi-structured interviews with 14 adult and spousal caregivers were conducted using an interview guide and transcripts were coded inductively via reflexive thematic analysis.Results First, clarity in communication enhances satisfaction with their decisions. This involves transparency of communication channels within the family unit which is in charge of helping their patient make EOL decisions, and with the healthcare professional. Second, satisfaction was enhanced with clear prognostication of the patient’s condition to the family who then used it to discuss their options. Finally, families often elect a lead facilitator within the family unit who manages the decision-making process, and collates multiple perspectives from all the stakeholders.Conclusions Based on these findings, we recommend that interventions to support family-based decision-making in Singapore should be based on the three principles of hearing patient values, sharing these values with other loved ones and providers and applying these values in collaboration with the providers and family members.