Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making
Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making
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DOI：
10.1007/s11606-007-0487-7
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发表时间：
2008-03-01
影响因子：
5.7
通讯作者：
McCullough, Laurence B.
中科院分区：
文献类型：
--
作者：
Braun, Ursula K.;Beyth, Rebecca J.;McCullough, Laurence B.
背景：临终决定经常由患者的代理人做出。种族和民族可能会影响这种决策。很少有研究描述不同种族/民族群体如何经历临终代理决策。目的：描述非裔美国人、白种人和西班牙裔重症患者代理决策者的自我报告经历，并研究种族、民族和文化与这种经历的关系。设计：目的样本包括种族/少数民族在定性研究中使用焦点小组访谈。参与者：这项研究的参与者是44名经验丰富的，大多数是女性，作为老年退伍军人的代理决策者。方法：对转录本进行定性分析，以确定主要主题，特别注意三组中每组可能独特的主题。结果：三组患者的临终决策负担体验相似。这种医疗、个人和家庭方面的负担由于预后和患者偏好的不确定性而加剧。对这种负担的反应的种族/民族差异涉及医生与家庭的关系、宗教和信仰，以及过去与种族/民族和睦的医生和非种族和睦的医生的经历。结论：无论种族/民族如何，在患者偏好不确定的情况下，重症患者的代理人似乎经历了显著增加的多维决策负担。这方面的负担代孕决策可能不完全赞赏的医生。医生应该识别并特别注意代孕者使用的策略，这些策略可能因种族/民族而异，以减少患者偏好的不确定性，从而减轻代孕者决策的负担，以帮助他们度过这一艰难的过程。
BACKGROUND: End-of-life decisions are frequently made by patients' surrogates. Race and ethnicity may affect such decision making. Few studies have described how different racial/ethnic groups experience end-of-life surrogate decision making.OBJECTIVES: To describe the self-reported experience the self-reported experience of African-American, Caucasian, and Hispanic surrogate decision makers of seriously ill patients and to examine the relationship of race, ethnicity, and culture to that experience.DESIGN: Purposive sample to include racial/ethnic minorities in a qualitative study using focus group interviews.PARTICIPANTS: The participants of the study were 44 experienced, mostly female, surrogate decision makers for older veterans.APPROACH: Transcripts were qualitatively analyzed to identify major themes, with particular attention to themes that might be unique to each of the three groups.RESULTS: The experience of burden of end-of-life decision making was similar in all three groups. This burden in its medical, personal, and familial dimensions is compounded by uncertainty about prognosis and the patient's preferences. Racial/ethnic variations of responses to this burden concerned the physician-family relationship, religion and faith, and past experiences with race/ethnicity concordant versus non-concordant physicians.CONCLUSIONS: Regardless of race/ethnicity, surrogates for seriously ill patients appeared to experience increased significant, multidimensional burdens of decision making under conditions of uncertainty about a patient's preferences. This aspect of the burden of surrogate decision making may not be fully appreciated by physicians. Physicians should identify and be especially attentive to strategies used by surrogates, which may vary by race/ethnicity, to reduce the uncertainty about a patient's preferences and thus the burden of surrogate decision making to assist them in this difficult process.