Kragh-Furbo Mette, French Maddy, Dunleavy Lesley, Hancock Sophie, Sanders Karen, Doherty Margaret, Gadoud Amy
The Centre for the Art of Dying Well, St Mary's University, Twickenham, UK.
International Observatory on End of Life Care, Health Innovation One, Lancaster University, Lancaster, UK.
J Palliat Care. 2025 Apr;40(2):162-167. doi: 10.1177/08258597231158325. Epub 2023 Feb 20.
It is common for relatives to feel uncertain about what to expect at the bedside of a dying loved one. The Centre for the Art of Dying Well together with clinical, academic and communications experts created a 'Deathbed Etiquette' guide offering information and reassurance to relatives. This study explores the views of practitioners with experience in end-of-life care on the guide and how it might be used. Three online focus groups and nine individual interviews were conducted with a purposive sample of 21 participants involved in end-of-life care. Participants were recruited through hospices and social media. Data were analysed using thematic analysis. Discussions highlighted the importance of effective communication that normalises experiences of being by the bedside of a dying loved one. Tensions around the use of the words 'death' and 'dying' were identified. Most participants also expressed reservations about the title, with the word 'deathbed' found to be old-fashioned and the word 'etiquette' not capturing the varied experiences of being by the bedside. Overall, however, participants agreed that the guide is useful for 'mythbusting' death and dying. There is a need for communication resources that can support practitioners in having honest and compassionate conversations with relatives in end-of-life care. The 'Deathbed Etiquette' guide is a promising resource to support relatives and healthcare practitioners by providing them with suitable information and helpful phrases. More research is needed on how to implement the guide in healthcare settings.
亲人对于在弥留之际的所爱之人床边会发生什么感到不确定是很常见的。善终艺术中心与临床、学术和沟通专家共同创作了一份“临终礼仪”指南，为亲人提供信息并使其安心。本研究探讨了有临终关怀经验的从业者对该指南的看法以及它可能如何被使用。对21名参与临终关怀的有目的抽样参与者进行了三个在线焦点小组讨论和九次个人访谈。参与者通过临终关怀机构和社交媒体招募。使用主题分析法对数据进行了分析。讨论强调了有效沟通的重要性，这种沟通能使在所爱之人弥留之际守在床边的经历正常化。确定了围绕使用“死亡”和“临终”这些词的紧张关系。大多数参与者也对该标题表示保留意见，认为“临终”一词过时，“礼仪”一词没有涵盖在床边的各种经历。然而，总体而言，参与者一致认为该指南对于破除关于死亡和临终的“神话”很有用。需要有沟通资源来支持从业者在临终关怀中与亲人进行诚实且富有同情心的对话。“临终礼仪”指南是一个有前景的资源，通过为亲属和医疗从业者提供合适的信息和有用的措辞来支持他们。关于如何在医疗环境中实施该指南还需要更多研究。
