Moniz Tracy, Melro Carolyn, Watling Chris
Communication Studies, Mount Saint Vincent University, Halifax, Nova Scotia, Canada
Communication Studies, Mount Saint Vincent University, Halifax, Nova Scotia, Canada.
Med Humanit. 2025 Feb 24;51(1):39-47. doi: 10.1136/medhum-2024-012926.
As the focus on end-of-life care intensifies, so too does the need to better understand the experiences of patients, caregivers and physicians. Delivering empathetic care requires a shared understanding of illness and its meaning and impact. The narratives of patients, caregivers and physicians each offer a distinct perspective on clinical experiences, yet comparative research is uncommon. This study compares written narratives about end-of-life illness and care by these groups.We created an archive of 332 first-person written narratives about end of life (patient=65, caregiver=156, physician=111) published between 1 January 2010 and 31 December 2019 through searching public domains (eg, national newspapers), personal blogs, and academic and literary journals in Canada. A comparative narrative analysis was conducted for patterns of content (eg, theme) and strategy (eg, characterisation).All three groups wrote about feeling gratitude. Patients also emphasised coping with change and carrying on. Caregivers further focused on grieving loss, and physicians most often wrote about valuing humanism. Physicians were most likely to ascribe agency to someone (ie, patients) or something (ie, death) other than themselves and to decentre themselves in the story. Patients and physicians most often made the patient the main character of their stories, while caregivers were as likely to centre the story on themselves as on the patient. Physicians were most likely to describe death as a source of tension, while patients and caregivers described the illness experience, often comparing it to battle. Physicians and caregivers tended to write testimonies, while patients wrote quests.Narrative research can illuminate unique aspects of end-of-life care. While death is a shared experience, each group approaches it differently. The disconnects have potential consequences for how end of life is experienced-whether patients' values are honoured, whether caregivers receive support, and whether physicians experience burn-out. We need to foster learning experiences that integrate these unique perspectives into medical education and practice, including leveraging the affordances of studying written narratives towards this end.
随着对临终关怀的关注日益增强，更好地了解患者、护理人员和医生的经历的需求也随之增加。提供富有同理心的护理需要对疾病及其意义和影响有共同的理解。患者、护理人员和医生的叙述各自提供了关于临床经历的独特视角，但比较研究并不常见。本研究比较了这些群体关于临终疾病和护理的书面叙述。我们通过搜索加拿大的公共领域（如全国性报纸）、个人博客以及学术和文学期刊，创建了一个包含332篇关于临终的第一人称书面叙述的档案库（患者=65篇，护理人员=156篇，医生=111篇），这些叙述发表于2010年1月1日至2019年12月31日之间。对内容模式（如主题）和策略（如人物塑造）进行了比较叙事分析。所有三个群体都写到了感恩之情。患者还强调应对变化和坚持下去。护理人员进一步关注悲痛失落，而医生最常写到重视人文主义。医生最有可能将行为归因于他人（即患者）或其他事物（即死亡）而非自己，并在故事中使自己处于次要地位。患者和医生最常将患者作为他们故事的主角，而护理人员将故事聚焦于自己和患者的可能性相同。医生最有可能将死亡描述为紧张的根源，而患者和护理人员描述疾病经历，常常将其比作战斗。医生和护理人员倾向于撰写证词，而患者撰写探索经历。叙事研究可以阐明临终关怀的独特方面。虽然死亡是一种共同的经历，但每个群体对待它的方式不同。这些脱节对于临终体验方式可能产生潜在影响——患者的价值观是否得到尊重、护理人员是否得到支持以及医生是否经历职业倦怠。我们需要培养学习体验，将这些独特视角融入医学教育和实践中，包括为此目的利用研究书面叙述的作用。
