An empirical analysis of the decision-making of forgoing life-sustaining treatments for patients with advanced dementia in the United States

Abstract

目的: 分析美国老年痴呆症患者放弃维持生命治疗的决策。 方法: 对美国某老年痴呆症专科护理中心(BDSC)的10个病例作纵向性研究,分析北美文化及医疗照护文化对放弃维持生命治疗决策的影响。 结果: BDSC有2个放弃维持生命治疗决策的模式(1)尊重患者意愿,预立遗嘱放弃维持生命治疗;(2)考虑患者的生存质量,预立遗嘱放弃维持生命治疗。放弃管饲及放弃抗生素治疗的考虑不同,前者基于共识的信念,后者是对生存质量的考虑。 结论: BDSC所倡议的照护模式得以实践,显示对传统医护价值有三方面的转变。一是当老年痴呆症到了晚期,接受患者已步入死亡的事实;二是将传统医护焦点从拯救生命转变至重视生存质量;三是专注临终关怀,并竭尽所能,让患者在生命最后的一段日子得到最好的照顾。 Objective: Considerable controversy over the justifications for forgoing life-sustaining treatment to patients with advanced dementia (AD) exists. Based on an ethnographic study, the decision-making practices for forgoing tube feeding and antibiotic treatment for AD patients in the U.S is examined. Methods: Prospective case studies were undertaken in a dementia special care unit (BDSC) over a period of six months. Data sources included clinical observation notes from 10 patients, and interview notes from their family members and healthcare providers. Three strategies were used to manage the data: event analysis, content analysis and cross-case analysis. The American Caucasian culture and hospice care culture provided the context for analysis. Results: Two patterns of decision-making were practiced in BDSC: (1) advance decision-making with respect paid to the patient’s wishes, and (2) advance decision-making focused on what is best for the patient. Differences in justifications for forgoing tube feeding and forgoing antibiotic treatment were discussed. Conclusions: Forgoing life-sustaining treatment decision is difficult to make within the clinical context. Underpinning these difficulties are the predominant values in current medical practice that support the biological determinants of life and medical technology for enhancing the quality of life. In resolving these difficulties, a moral paradigm shift in two respects is required for framing the care of patients dying with AD. They are a shift from the medical protraction of life and a shift towards forms of care that enhance quality of life within the natural-organic framework of emotional, relational, esthetic and spiritual well-being. In this study, a paradigm shift of values underpinning the practice of forgoing life-sustaining treatments for AD patients was observed in three aspects. First, the emphasis on prognostication based on biomedical markers in predicting the length of survival is shifted to a focus on the "diagnosis of dying". This act facilitates the transition from connecting the choice of treatment with the goal of resolving the emergent medical problem to that of the goal of comfort care. Second, the overriding concern in conventional medical practice with preserving life is shifting to an overriding concern of "what is best for the patient." Third, in the last days of life, the conventional approach of "trying to do everything for the patient" was true in BDSC, but the approach had shifted from a technological to a relational one. Providing a peaceful and dignified environment in which the patient could die in the last days are the primary concern.