患者“自主权”再思考——基于G市Z医院癌症患者的疾病告知实践研究

A rethink of autonomy: a case study of truth-telling for cancer patients in Z Hospital of G city

在当今中国社会的医疗实践中,广泛存在着患者,特别是重症患者被隐瞒病情的现象。本项研究分别从医生、家属和患者三方的视角和立场来展示疾病告知场景的微妙张力,并反思中国医疗实践中患者“自主权”的概念。首先,疾病告知和自主权具有社会建构属性,是由嵌入在中国医疗场域中的一系列因素,如医疗体制与政策、医患关系、医生的主观态度等共同塑造的。其次,在疾病告知的实践中,“家庭”往往是分裂的,患者与家属之间存在矛盾和冲突。中国疾病告知实践中的症结并非自主权主体由患者转移到家庭,而是在非自愿的情况下由患者移交给了家属,而“家属”并非“家庭”,不一定能代表患者的最大利益。最后,自主权概念中的“知情权”与“决策权”存在分离。不少患者在被剥夺了知情权的同时,不断试图做出有关自己身体和健康的决定;而另一些患者在知晓自己的病情、预后和治疗选择后,依然无法进行自主决策。嵌于医疗体制和家庭关系中的疾病告知和自主权实践是一个不断变化的过程,包含着患者、家属和医生在病程中的不断协商、斗争和妥协。

It is not uncommon to see physicians withhold information from patients, especially terminal patients. This paper discusses the concept of autonomy in Chinese medical situations from three perspectives of physicians, patients and their families. Firstly, truth-telling and autonomy, decided by medical system, doctor-patient relationship and doctor s choice, are socially constructed. Secondly, autonomy is often held by patient s families who do not always act in the best interests of the patients. Thirdly, the patients right to receive information about their diagnosis and illness and their right to make autonomous decisions are often separated. In practice, the truth-telling and autonomy are a process where patients, patients families and physicians are negotiating and compromising.