生命权视角下癌症晚期患者临终意愿依从性指标评估体系及管理模型构建

End-of-life (EOL) care is the core content of medical/nursing services for terminal cancer patients. To ensure that patients can get treatment and nursing programs that were consistent with their own EOL care preferences is the core element to measure the quality of EOL care. But EOL care preferences of terminal cancer patients were difficult to be followed in China now. Our previous studies have found that whether terminal cancer patients’ EOL care preferences can be followed had something to do with the cause of patients themselves, family members, medical staff and management department of hospital. Under the perspective of the right to life, this study will use mixed research method of quantitative and qualitative research to deeply explore the current situation and influencing factors of compliance of terminal cancer patients' EOL care preferences, and find out the main influencing factors through the statistical methods such as ROC curve, regression analysis and structural equation model. Delphi method and semi-structured interviews will be used to establish and check the compliance assessment index evaluation system of terminal cancer patients’ EOL care preferences; Based on the theory of advance care planning, and three-stage model of crisis management, the compliance management model of terminal cancer patients’ EOL care preferences which covers patients, family members, medical staff and management department of hospital will be established for terminal cancer patients in China, to promote the compliance of terminal cancer patients’ EOL care preferences to a large extent, and to provide theoretical support and decision-making suggestions for government’s policy making of hospice care.

终末照护是癌症晚期患者医疗/护理服务的核心内容。确保患者能获得与自己临终意愿相一致的治疗和护理方案，即患者临终意愿的依从性，是测量终末照护质量的核心要素。但目前我国癌症晚期患者的临终意愿难以被依从。本课题组前期研究发现，癌症晚期患者临终意愿是否被依从与患者自身、家属、医护人员及医院管理部门有关。本课题从生命权视角下，拟使用量性和质性研究相结合的混合研究法，深入挖掘癌症晚期患者临终意愿依从现状及影响因素，并通过感受性曲线，回归分析，结构方程模型等统计找出影响临终意愿依从的主要因素；并与德尔菲法、半结构访谈等方法相结合，构建癌症晚期患者临终意愿依从性指标评估体系并校验；基于预立医疗照护计划理论，借鉴危机管理三阶段模型，建立涵盖患者、家属、医护人员、医院管理部门四方的我国癌症晚期患者临终意愿依从性管理模型，最大程度的促进癌症患者临终意愿的依从，为政府制定临终关怀政策提供理论支撑和决策建议。

项目背景 确保患者能获得与自己临终意愿相一致的治疗和护理方案，即患者临终意愿的依从性，是测量终末照护质量的核心要素，但是目前我国癌症晚期患者的临终意愿难以被依从。.主要研究内容 本研究拟使用量性和质性相结合的混合研究方法，深入挖掘癌症晚期患者临终意愿依从性现状及影响因素，构建癌症晚期患者临终意愿依从性指标评估体系，建立涵盖患者、家属、医护人员的我国癌症晚期患者临终意愿依从性管理模型，最大程度的促进癌症晚期患者临终意愿的依从。.重要结果和关键数据 本研究结果发现，患者、家属及医护层面共计有16个层面的因素会影响癌症患者临终意愿的依从性。经过两轮专家咨询，最终提炼形成了包括4个一级指标，29个二级指标，97个三级指标的涵盖了患者本人、家属、医护方面共计三个层面的癌症晚期患者临终意愿依从性指标评估体系，构建了适合我国癌症晚期患者的临终意愿依从性管理模型。.科学意义 本课题首次系统开展了癌症患者临终意愿依从性的相关研究，从患者、家属、医护层面全面探查了影响癌症患者临终意愿依从性的原因，为提高癌症晚期患者临终意愿的依从性提供了新的理念和方法。首次研发了《癌症晚期患者临终意愿依从性指标评估体系》，可作为临床医护人员测量癌症晚期患者临终意愿依从性的测量工具。并研发了癌症晚期患者临终意愿依从性管理模型，分别从政策、经济支持、家庭应对、教育宣传、优化医疗资源方面提供了可供临床医护人员、社区人员实施的切实可行的干预方案。