基于患者、丧亲家属及医护人员多维视角的晚期癌症患者优逝照护模式的构建研究

死亡质量是衡量国家文明程度的重要指标，其最优目标是优逝，即遵从临床、文化和伦理的标准下，兼顾患者和家属的意愿，让其免遭悲伤和疼痛。而我国死亡质量指数不容乐观，在全球80个国家和地区中排位71。癌症是我国第1位的疾病死亡原因，其优逝水平更值得关注。在国内文化背景及医疗体制下，医疗机构内死亡的癌症患者优逝水平如何？有哪些因素能显著影响优逝？医疗照护如何帮助患者实现优逝？这一系列问题目前尚不清楚。本研究采用混合方法设计，首先利用我们前期验证的优逝评价工具，开展多中心回顾性横断面调研，评价癌症患者的优逝及医疗照护现状，构建优逝影响因素的结构方程模型；以此为基础，提出质性研究问题，对丧亲家属、医护人员、末期癌症患者进行半结构式访谈，探讨个体、家庭及医疗照护因素对优逝的影响机制。最后结合量性质性研究结果，构建晚期癌症患者优逝照护模式。该模式为改善生命末期医疗照护实践，帮助癌症患者实现优逝提供理论依据。

The quality of death is an important indicator of civilization of a country. Good death is the optimal goal of quality of death. Good death is one that is free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards. However, the quality of death index of mainland China is not optimistic, ranking 71 among 80 countries and regions globally. Cancer has become the top one cause of death in China, thus the good death of cancer deserves more attention. Good death is a closely related to the culture and medical system. So, under Chinese culture and medical system, what is the true status of quality of death of cancer patients who died in medical institutions? What specific factors affect the quality of death of cancer patients? What kind of medical care can help patients achieve good death? The answer of these series of questions is currently unclear. .Therefore, this study adopts a mixed method design including quantitative and qualitative studies. First, a multi-center retrospective cross-sectional survey will be carried out to evaluate the current status of cancer patients' good death and quality of end-of-life care by using our pre-validated tools of good death from the perspectives of bereaved family members. A structural equation model of influencing factors of good death will then be constructed. Based on the quantitative results, qualitative research questions will be put forward, followed by corresponding interview outlines. Semi-structured interviews will be conducted on bereavement family members, doctors and nurses and patients with end-stage cancer. The qualitative study is aimed to explore the mechanism of individual, family and medical care factors on good death from multiple perspectives. Finally, combined with quantitative and qualitative research results, a care model of good death for cancer patients will be constructed. This model will provide a guiding theoretical basis for improving the practice of end-of-life care and helping cancer patients achieve good death.