全科医生视角下肿瘤晚期居家临终关怀患者的医学叙事法应用研究

General Practitioners’ Perspective of Home-based Hospice Care for Advanced Cancer Patients:a Narrative-based Medicine Study

医学叙事法是指将叙事方法运用于医学服务、研究及教育的过程,其将患者视作有个人故事的人,而非仅仅是症状或器官的问题,在解决患者躯体疾病的同时,也关注其社区关系和心理维度。目前,我国关于医学叙事法的能力培养、医学人文与共情等相关教科书仍停留在大框架和大概念上,缺乏对培养/实践细则的深入研究和大范围推广,但在临终关怀服务上的应用探索较多。本文以一例肝癌晚期居家临终关怀患者为观察对象,与患者及其社会支持系统(家属、照护者、宗亲或族长)进行深度访谈,采用倾听、叙事对话、平行病历等方法收集资料。医学叙事法在肿瘤临终患者的实操层面包括提供服务的多学科服务小组和患者社会支持系统的叙事介入,通过关注、平行病历的再现、共情,对患者身、心、灵层面提供全面照护,缓解患者病痛,提高临终关怀患者的生活质量。

Narrative-based medicine is a approach used in medical services,research and education,involves seeing the patients'symptoms or organ problems from their perspective,and paying attention to their community relationships and psychological conditions while treating the physical illness.In China,most textbooks associated with narrative-based medicine,medical humanities and empathy remain in theoretical framework and concepts,lacking of in-depth study and extensive promotion of training or practice generally,although there are some explorations in hospice care services.We reported a case of advanced liver cancer with home-based hospice care,with data collected from parallel medical records of the in-depth interviews with the patient and his supporters(family members,caregivers,clan relatives or the clan elder)written with a narrative approach after listening.The practice of narrative-based medicine in advanced cancer patients involves the multidisciplinary team and the patient support system,providing integrated physical,mental and spiritual care for alleviating the pain,and improving the quality of life of the patient via paying attention to them,and using empathy in healthcare perceived from writing parallel medical records of the patient's sufferings and thoughts with a narrative approach.