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关于善终与恶终的叙事细微差别:内科医生在高科技工作场所的故事

Narrative nuances on good and bad deaths: internists' tales from high-technology work places.

作者信息

DelVecchio Good Mary Jo, Gadmer Nina M, Ruopp Patricia, Lakoma Matthew, Sullivan Amy M, Redinbaugh Ellen, Arnold Robert M, Block Susan D

机构信息

Department of Social Medicine, Harvard Medical School, 641 Huntington Avenue, Boston, MA 02115, USA.

出版信息

Soc Sci Med. 2004 Mar;58(5):939-53. doi: 10.1016/j.socscimed.2003.10.043.

Abstract

Public and professional discourses in American society about what constitutes a "good death" have flourished in recent decades, as illustrated by the pivotal SUPPORT study and the growing palliative care movement. This paper examines a distinctive medical discourse from high-technology academic medical centers through an analysis of how physicians who are specialists in internal medicine tell stories about the deaths of patients in their care. 163 physicians from two major academic medical centers in the United States completed both qualitative open interviews and quantitative attitudinal measures on a recent death and on the most emotionally powerful death they experienced in the course of their careers. A subsample of 75 physicians is the primary source for the qualitative analysis, utilizing Atlas-ti."Good death" and "bad death" are common in popular discourse on death and dying. However, these terms are rarely used by physicians in this study when discussing specific patients and individual deaths. Rather, physicians' narratives are nuanced with professional judgments about what constitutes quality end-of-life care. Three major themes emerge from these narratives and frame the positive and negative characteristics of patient death. Time and Process: whether death was expected or unexpected, peaceful, chaotic or prolonged; Medical Care and Treatment Decisions: whether end-of-life care was rational and appropriate, facilitating a "peaceful" or "gentle" death, or futile and overly aggressive, fraught with irrational decisions or adverse events; Communication and Negotiation: whether communication with patients, family and medical teams was effective, leading to satisfying management of end-of-life care, or characterized by misunderstandings and conflict. When these physicians' narratives about patient deaths are compared with the classic sociological observations made by Glaser and Strauss in their study A Time for Dying (1968), historical continuities are evident as are striking differences associated with rapid innovation in medical technologies and a new language of medical futility. This project is part of a broader effort in American medicine to understand and improve end-of-life care.

摘要

近几十年来,美国社会关于何为“善终”的公众及专业讨论蓬勃发展,关键的“支持性治疗和姑息性关怀结果及资源”(SUPPORT)研究以及不断壮大的姑息治疗运动便是例证。本文通过分析内科专家医生讲述其照料患者死亡情况的方式,审视了高科技学术医疗中心一种独特的医学话语。来自美国两家主要学术医疗中心的163名医生就近期的一次死亡以及他们职业生涯中经历的最具情感冲击力的死亡,完成了定性开放式访谈和定量态度测量。75名医生的子样本是定性分析的主要来源,分析软件使用的是阿特拉斯.ti。“善终”和“恶终”在关于死亡和临终的大众话语中很常见。然而,在本研究中,医生们在讨论具体患者和个别死亡情况时很少使用这些术语。相反,医生的叙述中带有关于何为优质临终关怀的专业判断,颇具细微差别。这些叙述中出现了三个主要主题,勾勒出患者死亡的积极和消极特征。时间与过程:死亡是预期的还是意外的、平静的、混乱的还是拖延的;医疗护理与治疗决策:临终护理是否合理恰当,是否促成了“平静”或“安详”的死亡,还是无效且过度激进,充满不合理决策或不良事件;沟通与协商:与患者、家属和医疗团队的沟通是否有效,是否带来了令人满意的临终护理管理,还是以误解和冲突为特征。当将这些医生关于患者死亡的叙述与格拉斯和施特劳斯在其研究《死亡时刻》(1968年)中所作的经典社会学观察进行比较时,历史连续性显而易见,同时也存在与医疗技术的快速创新以及新的医疗无效语言相关的显著差异。该项目是美国医学界为理解和改善临终关怀所做更广泛努力的一部分。

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