Exploring family death preparation in Taiwan

Background: Preparing families for a relative’s death is fundamental in palliative care, as it can improve both the dying process and bereavement outcomes. However, current guidelines remain vague and offer limited practical direction. Research has predominantly focused on Western contexts, restricting its cultural relevance. Evidence from non-Western societies is needed to inform culturally sensitive and appropriate care. Aim: To explore Taiwanese families’ experiences of preparing for a relative’s death and to examine how they can be better prepared during this process. Methods: A qualitative approach underpinned by critical realism was employed, comprising three complementary studies. A systematic review with narrative synthesis examined Taiwanese families’ bereavement experiences following an expected death, offering insights into family death preparation. These findings informed a qualitative interview study, analysed with reflexive thematic analysis, which explored how family caregivers prepared for a relative’s death within specialist palliative care. Building on this, a nominal group technique study with specialist palliative care professionals was undertaken to develop and prioritise recommendations for supporting families in this process. Findings: The systematic review of 17 studies identified family death preparation as a key element of end-of-life care that shapes bereavement experiences. The interview study with 22 family caregivers showed that preparation was needed during and after death. The overarching theme of “getting everything right to have no regrets between the dead and the living” was seen as crucial to ease bereavement. Four themes were developed: (1) ‘making the right end-of-life decisions is crucial but complex’, exploring how family-centred and protective approaches were applied, with an emphasis on maintaining family harmony through consensus-building; (2) ‘becoming a competent caregiver is the priority’, addressing preparations for fulfilling responsibilities and ensuring the dying relative's comfort to reduce future regret about not having done enough; (3) ‘having a good ending but not the end of the relationship’, addressing preparations for appropriate conduct at the moment of death, meaningful funerals, enhancing the deceased’s afterlife, and maintaining continuing relationships; and (4) ‘using religious beliefs and cultural norms to guide preparation’, examining how these values shaped understandings of a good death and encouraged emotional restraint before and after death as culturally and religiously appropriate. Finally, the nominal group technique study with 10 specialist palliative care professionals generated 42 recommendations that were refined into four finalised recommendations. It also highlights the need for a multidimensional approach to strengthening family death preparation across individual, systemic, societal, and national levels. Based on the methodological reflections upon the experience of conducting the nominal group study in Taiwan, methodological guidance was developed for applying this technique in future research. Conclusion: A Taiwan-specific conceptual model integrating clinical, relational, cultural-religious, and socio-structural dimensions of family death preparation was developed. The findings extend the continuing bonds theory by demonstrating bereavement as a continuation of family death preparation, positioning appropriate preparation as proactive care that can prevent poor bereavement outcomes. The study reframes palliative and end-of-life care by emphasising family involvement, the enduring role of religious beliefs, and culturally specific understandings of a good death. The Taiwanese experience underscores the need to decolonise palliative care and bereavement by incorporating religious beliefs and cultural norms into care models.