Mikelyte Rasa, Dening Karen Harrison, Oliveira Déborah, Vanelli Julia Maria, Neves Adriele Ferreira, Dekker Natashe Lemos, Roque Francelise Pivetta, de Oliveira Vidal Edison Iglesias
Research Fellow, Centre for Health Services Studies, University of Kent, Canterbury, UK.
Head of Research and Publications, Dementia UK, London, England.
BMC Palliat Care. 2025 May 16;24(1):138. doi: 10.1186/s12904-025-01771-w.
It is unclear what People Living with Dementia (PLwD) consider a good death to entail, or how those perspectives vary according to culture and context. We aimed to compare the meaning of a good death for PLwD in Brazil and in the United Kingdom (UK).
In this cross-sectional qualitative study, we conducted semi-structured interviews with a convenience sample of 32 PLwD (16 in Brazil and 16 in the UK) using jointly designed, equivalent interview guides. Two teams of interdisciplinary researchers independently analysed transcripts for their country using inductive thematic analysis, followed by jointly developing overarching themes on the contrasts and similarities across both settings.
We identified three shared themes: choice and control; spirituality; and fears and wishes. Choice and control permeated all aspects of what a good death meant to PLwD in the UK but was largely absent from Brazilian narratives. The opposite was true for spirituality, which was central to the meaning of a good death in Brazil, while far less prominent in the UK. In both countries, previous experiences with the death of others often shaped wishes and fears towards their own deaths.
Our results have potential to expand the awareness and sensitivity of health and social care professionals around different cultural views on what a good death means for PLwD and what helps or hinders achieving it. Additionally, our findings challenge global indices of quality of death that do not take cultural and contextual differences into account.
目前尚不清楚痴呆症患者（PLwD）认为怎样才算是善终，以及这些观点如何因文化和背景而异。我们旨在比较巴西和英国（UK）的痴呆症患者对于善终的理解。
在这项横断面定性研究中，我们使用共同设计的等效访谈指南，对32名痴呆症患者（巴西16名，英国16名）的便利样本进行了半结构化访谈。两组跨学科研究人员分别对本国的访谈记录进行归纳主题分析，随后共同提炼出关于两种背景下异同点的总体主题。
我们确定了三个共同主题：选择与控制；灵性；恐惧与愿望。选择与控制贯穿于英国痴呆症患者对善终意义的各个方面，但在巴西受访者的叙述中基本未提及。灵性方面则相反，它是巴西善终意义的核心，而在英国则远没有那么突出。在两个国家，以往对他人死亡的经历往往塑造了他们对自身死亡的愿望和恐惧。
我们的研究结果有可能提高健康和社会护理专业人员对不同文化观点的认识和敏感度，这些观点涉及善终对痴呆症患者意味着什么，以及什么有助于或阻碍实现善终。此外，我们的研究结果对未考虑文化和背景差异的全球死亡质量指数提出了挑战。
