Roman Gabriel, Enache Angela, Pârvu Andrada, Gramma Rodica, Moisa Ştefana Maria, Dumitraş Silvia, Ioan Beatrice
Med Health Care Philos. 2013 Aug;16(3):483-97. doi: 10.1007/s11019-012-9425-5.
Medical communication in Western-oriented countries is dominated by concepts of shared decision-making and patient autonomy. In interactions with Roma patients, these behavioral patterns rarely seem to be achieved because the culture and ethnicity have often been shown as barriers in establishing an effective and satisfying doctor-patient relationship. The study aims to explore the Roma's beliefs and experiences related to autonomy and decision-making process in the case of a disease with poor prognosis. Forty-eight Roma people from two Romanian counties participated in semi-structured interviews, conducted by a research team from the University of Medicine and Pharmacy of Iasi. Participants were recruited among the chronically ill patients and caregivers. The Roma community opposes informing the terminal patients about their condition, the "silence conspiracy" being widely practiced. The family fully undertakes the right of decision making, thus minimizing the patient's autonomy. We identified ethical dilemmas concerning autonomy, lack of patients' real decision-making power, and paternalistic attitudes exerted firstly by the family and, on demand, by the physician. Instead, the Roma patient benefits from a very active support network, being accompanied at the hospital by numerous relatives. The patient's right to make autonomous decisions promoted in the Western countries and stipulated by the Romanian law has diminished value in the Roma community. For the Roma, the understanding of dignity is not simply individual and personal, but it is closely related to their cultural particularities. Ignoring their cultural values could create conflicts between healthcare providers and community.
在以西方为导向的国家，医疗沟通主要由共同决策和患者自主权的概念主导。在与罗姆族患者的互动中，这些行为模式似乎很少能够实现，因为文化和种族常常被证明是建立有效且令人满意的医患关系的障碍。该研究旨在探讨在预后不良疾病的情况下，罗姆族人关于自主权和决策过程的信念与经历。来自罗马尼亚两个县的48名罗姆人参与了由雅西医药大学的一个研究团队进行的半结构化访谈。参与者是从慢性病患者及其护理人员中招募的。罗姆族社区反对告知晚期患者其病情，“沉默阴谋”被广泛践行。家庭完全承担决策的权利，从而将患者的自主权降至最低。我们识别出了有关自主权、患者缺乏真正决策权以及首先由家庭并在必要时由医生施加的家长式态度等伦理困境。相反，罗姆族患者受益于一个非常活跃的支持网络，在医院时有众多亲属陪伴。西方国家所倡导且罗马尼亚法律所规定的患者自主决策的权利，在罗姆族社区的价值有所降低。对罗姆人而言，尊严的理解并非仅仅是个人的，而是与他们的文化特性密切相关。忽视他们的文化价值观可能会在医疗服务提供者和社区之间引发冲突。
