Steinhauser K E, Christakis N A, Clipp E C, McNeilly M, McIntyre L, Tulsky J A
Veterans Affairs Medical Center (152), 508 Fulton St, Durham, NC 27705, USA.
JAMA. 2000 Nov 15;284(19):2476-82. doi: 10.1001/jama.284.19.2476.
A clear understanding of what patients, families, and health care practitioners view as important at the end of life is integral to the success of improving care of dying patients. Empirical evidence defining such factors, however, is lacking.
To determine the factors considered important at the end of life by patients, their families, physicians, and other care providers.
Cross-sectional, stratified random national survey conducted in March-August 1999.
Seriously ill patients (n = 340), recently bereaved family (n = 332), physicians (n = 361), and other care providers (nurses, social workers, chaplains, and hospice volunteers; n = 429).
Importance of 44 attributes of quality at the end of life (5-point scale) and rankings of 9 major attributes, compared in the 4 groups.
Twenty-six items consistently were rated as being important (>70% responding that item is important) across all 4 groups, including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a "whole person." Eight items received strong importance ratings from patients but less from physicians (P<.001), including being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God. Ten items had broad variation within as well as among the 4 groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Participants ranked freedom from pain most important and dying at home least important among 9 major attributes.
Although pain and symptom management, communication with one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at the end of life differ by role and by individual. Efforts to evaluate and improve patients' and families' experiences at the end of life must account for diverse perceptions of quality. JAMA. 2000;284:2476-2482.
清楚了解患者、家属及医疗从业者认为临终时重要的事项，对于改善临终患者护理的成功至关重要。然而，缺乏界定此类因素的实证证据。
确定患者、其家属、医生及其他护理提供者认为临终时重要的因素。
1999年3月至8月进行的全国性横断面分层随机调查。
重症患者（n = 340）、近期丧亲的家属（n = 332）、医生（n = 361）及其他护理提供者（护士、社会工作者、牧师及临终关怀志愿者；n = 429）。
在4组中比较临终时44项质量属性的重要性（5分制）以及9项主要属性的排名。
26项在所有4组中均一直被评为重要（>70%的受访者认为该项目重要），包括疼痛和症状管理、死亡准备、获得成就感、治疗偏好决策以及被视为“完整的人”。8项在患者中获得高度重要性评分，但在医生中评分较低（P<.001），包括保持神志清醒、安排好葬礼、不成为负担、帮助他人以及与上帝和解。10项在4组内及组间存在广泛差异，包括维持生命治疗的决策、在家中死亡以及谈论死亡的意义。在9项主要属性中，参与者将免于疼痛列为最重要，将在家中死亡列为最不重要。
尽管疼痛和症状管理、与医生沟通、死亡准备以及获得成就感的机会对大多数人很重要，但其他对临终质量重要的因素因角色和个体而异。评估和改善患者及家属临终体验的努力必须考虑到对质量的不同看法。《美国医学会杂志》。2000年；284:2476 - 2482。
