Braun Ursula K, Beyth Rebecca J, Ford Marvella E, McCullough Laurence B
Michael E. DeBakey VA Medical Center, Section of Health Services Research, Houston Center for Quality of Care and Utilization Studies, Houston, TX, USA.
J Gen Intern Med. 2008 Mar;23(3):267-74. doi: 10.1007/s11606-007-0487-7. Epub 2008 Jan 3.
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.
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.
Purposive sample to include racial/ethnic minorities in a qualitative study using focus group interviews.
The participants of the study were 44 experienced, mostly female, surrogate decision makers for older veterans.
Transcripts were qualitatively analyzed to identify major themes, with particular attention to themes that might be unique to each of the three groups.
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.
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.
临终决策通常由患者的替代决策者做出。种族和民族可能会影响此类决策。很少有研究描述不同种族/民族群体在临终替代决策中的经历。
描述非裔美国人、白人和西班牙裔重症患者替代决策者的自我报告经历，并研究种族、民族和文化与该经历的关系。
在一项定性研究中采用目的抽样法纳入种族/民族少数群体，使用焦点小组访谈。
该研究的参与者是44名经验丰富的老年退伍军人替代决策者，大多数为女性。
对访谈记录进行定性分析以确定主要主题，特别关注可能在三组中各自独有的主题。
三组在临终决策负担的经历方面相似。这种负担在医疗、个人和家庭层面因预后的不确定性以及患者的偏好而加剧。对这种负担的反应在种族/民族方面的差异涉及医患关系、宗教和信仰，以及过去与种族/民族相符和不相符的医生打交道的经历。
无论种族/民族如何，重症患者的替代决策者在患者偏好不确定的情况下似乎都面临着增加的、重大的、多维度的决策负担。医生可能并未充分认识到替代决策负担的这一方面。医生应识别并特别关注替代决策者所采用的策略，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，从而减轻替代决策的负担，在这一艰难过程中帮助他们。
