【作者】 李泉；

【导师】 陈晓阳；

【作者基本信息】 山东大学 ， 人文医学， 2013， 博士

【摘要】 病人自主权是病人权利中最为基本的一种权利。病人参与决策、病人自主的医疗决策模式日益取代以医疗父权为基础的医生代为决策的医疗模式。尊重自主也是西方生命伦理学四原则之一。但目前困扰我们的现实和理论问题是：所谓病人的自主权是病人单个人的自主、自决,还是基于家庭的家庭成员的共同决定?是坚持现代西方自由主义、个人主义的生命伦理价值,还是坚持儒家传统中医生、病人、家属之间相互依从、相互协商的生命伦理价值?也就是说,在医疗决策中家庭是否要发挥作用?应发挥哪些作用?怎样发挥作用?本文首先从中西方医疗史角度考察了家庭在医疗决策中功能和作用演变的历程和规律,分析了影响家庭在医疗决策中发挥作用的文化与社会因素；然后,结合临床实践分析了医疗决策的独特性和复杂性,论证了儒家文化背景下,家庭参与医疗决策的意义和必要性；最后,提出了充分发挥家庭作用,病人、病人家属、主治医生协商对话、共同决策的建议。通过对中西方医疗史的考察,以及对西方病人自主权的理论与实证研究,发现在中国社会文化环境下,病人自主权利的实现不可能走向西方个人自由主义式的完全独立自主。在中国的医疗环境中,仅仅依靠病人自主的方式是无法充分保护病人的生命健康利益的。在儒家文化背景下,个人是一个以家为核心的有机个人,社会是一个以家为核心的有机体。家庭不仅提供经济支持,而且提供情感支持,不仅承载人的成长和人的再生产等基本职能,更是一个神圣的伦理实体。在生命伦理视阈下,家庭具有关心成长、呵护健康的职责,具有共同负担医疗费用、共同承受医疗后果的功能。因此,让家庭参与医疗决策具有伦理根据。从本体论来看,病人并非孤立的个体,而是生活在家庭之中的家庭的一员,要对家庭承担义务和责任,所以病人的自主权要受家庭决定权的制约,病人自主其实是在家庭支持、家庭参与和家庭协调一致基础上的自主,是适应儒家文化土壤的病人自主。从德性论来看,家庭是德性的实体,患病绝不是单个人的事情,而是整个家庭共同面临的处境。病人会从家庭寻找和获得经济以及精神上的支持,家庭也会主动地给予真诚的关心和周到的慰藉。从功能论来看,家庭具有医疗决策功能,全家齐心协力,共同参与,同舟共济,才是最好的面对疾病的方式。家庭参与决策并不是对患者自主权的剥夺,相反,家属的介入是对患病家庭成员的关爱,是对患者不幸与痛苦的分担,是为了更好地实现与医生的沟通。因此,在中国文化背景下,需要着眼于患者与家属的重要关系来重新理解病人自主权。缺乏家属有效参与的病人自主是不完整的,病人需要作出面向和基于整个家庭的负责任的决定和选择,医疗决策除了医生、病人参与之外,病人家属的参与也是须臾不可少的。最后,结合医疗决策实践,本文提出医生、病人、病人家属共同参与的医疗决策模式：第一,对于患者医疗费用支出对家庭影响较小的治疗性医疗行为,以病人本人的意愿为主,可由病人本人行使签字权。第二,在患者医疗费用支出对家庭影响较大的医疗行为,应征得病人本人和其家属的一致同意。医疗实践中,考虑到患者本人行动、思考的不便,以及为了避免不良信息对患者本人的伤害,患者可以将自己的知情同意权委托给亲属代为行使。这样,家属与医生沟通、商讨之后的医疗决定不仅代表家庭的意愿也代表患者本人的决定。第三,对于非治疗性医学行为应以家属的意见为主,由家属行使签字权。由家属来签字,可以就医疗行为事先在家庭内部充分协商沟通,使决策更合理,有助于协调医患关系,也可以避免家庭内部的矛盾,避免家庭内部的矛盾冲突。第四,病人和家庭都可能做出非理性的医疗决策,一旦非理性的决定危及病人的生命健康时,需要医生行使特殊干涉权,对病人或家庭的决策进行强制干涉,做出有利于病人的决定。更多还原

【Abstract】 With the rise of human rights movement and advancement of medical technology, more and more attention has been paid to patients’ decision-making right. The mode of giving the final decision right to patients has generally replaced the mode based on medical patriarchy. However, we are confronted with the theoretical and practical problems: the so-called patient’s autonomy is the patient’s self-determination or the joint decision of family members; we should adhere to bioethics value of modern western liberalism and individualism or insist on traditional Confucian bioethics value based on mutual compliance and mutual consultation among doctor, patient and family member. That is to say, should family play a role in medical decision-making? If so, what role should family play and how to play?First, this paper explores the function and role of family from the perspective of cultural sociology, among which the structure and function of Confucian social family have been analyzed emphatically. Then, combining with clinical practice, this paper analyses the uniqueness and complexness of medical decision-making. At last, this paper suggests giving full play of the function of family, that is, patient, patent’s family and doctor consult with each other and make a joint decision.By means of theoretical and empirical study of western patient’s autonomy, the author finds that in Chinese social and cultural environments, with regard to decision-making right, patients, by no means, enjoy as complete independence from others’intervention as western individual liberalism does. Under Chinese medical environments, patients’life and health will never receive thorough and comprehensive protection via single dependence on their own decision. Family is a small social community on the basis of marriage relationship, kinship relationship and adoptive relationship, which is an independent economic unit taking growth and reproduction of individual as its basic functions. In the perspective of bioethics, family has obligation of caring growth and health, sharing the medical expense and bearing the medical consequences together. As a small social community on the basis of marriage, kinship dnd adoption, family constitutes an independent economic unit whose basic functions mainly consist in people’s growth and reproduction. From the perspective of bioethics, it is specific care for individual growth and health and common responsibility for medical expense and consequences that materializes a family’s function. Therefore, family participant in medical decision-making does have its ethics basis.From the point of view of ontology, patient is not an isolated individual, but a member of family with duty and obligation for the family. Therefore, patient’s autonomy is constrained by family’s decision and should combine with the participant of family members in order to mediate the conflict between concept of human rights and cultural traits. From the perspective of virtue theory, family is the substance of virtue. Getting illness is not just an individual problem, but the situation the family faces. Patient can get economic and spiritual support from family while family proactively gives sincere care and considerate comfort. In the perspective of consequentiality, the best way to face illness is participant together of the whole family. Family participant is not the deprival of patient’s autonomy; on the contrary, family intervene intervention makes family bear the burden of decision-making, which is unbearable for patient. Therefore, under Chinese cultural background, patient’s autonomy should be understood newly through the relationship between patient and family. The patient’s autonomy lacking effective participant is not complete. Patient need make the decision and choice for the whole family. Besides doctor and patient, the participant of patient’s family is also essential in medical decision.In the end, combining with medical decision-making practice, this paper puts forward the medical decision-making mode based on co-participant of doctor, patient and patient’s family:First, remedial medical act whose medical expense has little influence over family can be decided by patient himself\herself on the basis of his\her own will. Second, the medical act with great influences of medical expense over family should be approved by patient and family. Third, non-remedial medical act should be based on the family’s opinion. Fourth, family decision can be irrational. When family decision may endanger patient’s health and life, doctor is obliged to interfere it, that is, exercise the special right of interference to make the choice which is good for patient.更多还原