What's holding back the making of Living Wills? A qualitative study based on stakeholder perspectives.

Abstract

To analyze challenges and complexities associated with Living Wills (LWs) under current medical regulations from the perspectives of diverse stakeholders, and to inform evidence-based strategies for improving LWs implementation in Asian and global contexts. This phenomenological study conducted semi-structured interviews with stakeholders involved in the LWs making process in Shenzhen, China (July 2023-July 2024). A hybrid snowball-purposive sampling strategy was adopted. The data were analyzed using Rapid Qualitative Analysis and Colaizzi's phenomenological method. Our study revealed key tensions in the process of making LWs among 36 stakeholders, including (potential) LWs makers, their family members, healthcare providers, legal professionals, social workers, and volunteers. Three themes emerged from the analysis, each comprising two subthemes: (1) Where to make Living Wills (Outside hospitals; Inside hospitals); (2) When to make Living Wills (Too early; Too late); (3) Who is involved in making end-of-life treatment decisions (Role of family members; Role of medical staff). Significant discrepancies exist between legislative aims to uphold patients' autonomy and the implementation of LWs. Limited public awareness of LWs underscores the need for death educational initiatives. Given the observed dominance of familial and clinical stakeholders in the treatment decision-making process, developing standardized multidisciplinary communication models such as Advance Care Planning (ACP) is essential to facilitate LWs adoption. Stakeholders should prioritize collaborative efforts to: (1) enhance public understanding of LWs and ACP; (2) protect patients' informed consent and autonomy; (3) improve LWs regulations and promote ACP models that align with Asian cultural contexts.