Consulting with a folk deity before making decisions: spiritual practices in parents facing end-of-life decisions for their child on life support with brain stem dysfunction

Abstract

Background Adolescents with brain stem dysfunction may undergo many invasive treatments, and parents are often faced with making the decision to withdraw treatment. However, in the face of their child’s death, the spiritual practices of parents dealing with end-of-life decision-making remain under investigated. Purpose This study explores the spiritual practices in parents making end-of-life decisions for adolescents on life support with brain stem dysfunction. Method A descriptive phenomenological study was conducted through in-depth interviews with three parents of two adolescents in Taiwan. Data were analysed using Colaizzi’s seven-step protocol. Results Three main themes emerged: (1) faith during decision-making, (2) struggles during decision-making, (3) transformation during decision-making. The findings indicate that “transforming the nature of hope” is the essence of the experience. Conclusion Family-centred care, gaining insight into parental spiritual practices, and developing culturally-appropriate care are recommended.

Keywords

• spiritual practices
• parents
• end-of-life
• decision making
• brain stem dysfunction
• qualitative