Talking with terminally ill patients and their Caregivers about death, dying, and bereavement - Is it stressful? Is it helpful?
Talking with terminally ill patients and their Caregivers about death, dying, and bereavement - Is it stressful? Is it helpful?
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DOI：
10.1001/archinte.164.18.1999
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发表时间：
2004-10-11
影响因子：
--
通讯作者：
Emanuel, LL
中科院分区：
文献类型：
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作者：
Emanuel, EJ;Fairclough, DL;Emanuel, LL
背景：与绝症患者讨论临终问题通常被认为是痛苦和有害的。本研究旨在评估对绝症患者及其照顾者关于死亡、临终和丧亲之痛的访谈是否有压力和/或有帮助。方法：对来自美国6个地区的预计存活时间不超过6个月的患者进行面对面访谈，并在2 ~ 6个月后再次访谈。他们的照顾者分别接受了采访。在访谈结束时，患者和护理人员被问及访谈的压力和帮助程度。在1131名符合条件的患者中，有988名（87.4%）接受了访谈；在915名符合条件的护理人员中，有893名（97.6%）接受了访谈。结果：在第一次访谈结束时，1.9%的患者报告在访谈中经历了很大的压力，7.1%的患者报告有压力，88.7%的患者报告很少或没有压力。在照顾者中，1.5%的人有很大的压力，8.4%的人有一些压力，89.7%的人很少或没有压力。据报道，重新面试造成的压力略大。总体而言，16.9%的患者表示最初的面谈非常有帮助，29.6%的患者表示有些帮助，49.6%的患者表示很少或没有帮助。在护理人员中，19.1%的人表示最初的采访非常有帮助，34.3%的人表示有点帮助，44.9%的人表示很少或没有帮助。据报道，第二次面试的帮助程度略低。经历疼痛的患者（优势比[OR]， 1.26； 95%可信区间[CI]， 1.02-1.56），对死亡更有个人意义（OR, 3.05; 95% CI, 2.02-4.59），以及不太容易谈论生命结束（OR, 1.32; 95% CI, 1.091.60），更有可能报告压力。来自少数民族（OR, 1.85; 95% CI, 1.31-2.63）、对生命结束感到焦虑（OR, 1.39; 95% CI, 1.16-1.67）、更有灵性（OR, 1.30; 95% CI, 1.06-1.61）和平静（OR, 1.25; 95% CI, 1.081.45）的患者更有可能报告访谈有帮助。压力和乐于助人之间没有关系。结论：绝症患者和他们的照顾者可以在最小压力的结构化访谈中讨论死亡、临终和丧亲之痛，并报告访谈是有帮助的。机构审查委员会不应在没有可靠证据表明临终病人会有压力或其他有害的情况下，预先限制对临终病人的调查。
Background: Discussing end-of-life issues with terminally ill patients is often considered distressing and harmful. This study was conducted to assess whether interviewing terminally ill patients and their caregivers about death, dying, and bereavement is stressful and/or helpful.Methods: Patients from 6 sites in the United States who were estimated to have 6 months or less to live were interviewed in person and reinterviewed 2 to 6 months later. Their caregivers were interviewed separately. At the end of the interviews, patients and caregivers were asked how stressful and how helpful the interview had been. Of 1131 eligible patients, 988 (87.4%) were interviewed, and of 915 eligible caregivers, 893 (97.6%) were interviewed.Results: At the end of the first interview, 1.9% of the patients reported having experienced a great deal of stress, 7.1% some stress, and 88.7% little or no stress from the interview. Among the caregivers, 1.5% reported a great deal of stress, 8.4% some stress, and 89.7% little or no stress. Slightly more stress was reported to have been caused by the reinterview. Overall, 16.9% of the patients reported the initial interview as very helpful, 29.6% as somewhat helpful, and 49.6% as offering little or no help. Among the caregivers, 19.1% reported the initial interview as very helpful, 34.3% as somewhat helpful, and 44.9% as offering little or no help. The reported helpfulness of the second interview was slightly less. Patients experiencing pain (odds ratio [OR], 1.26; 95% confidence interval [CI], 1.02-1.56), more personal meaning in dying (OR, 3.05; 95% CI, 2.02-4.59), and less ease with talking about the end of life (OR, 1.32; 95% CI, 1.091.60) were significantly more likely to report stress. Patients who were from an ethnic minority (OR, 1.85; 95% CI, 1.31-2.63), anxious about the end of their life (OR, 1.39; 95% CI 1.16-1.67), more spiritual (OR, 1.30; 95% CI, 1.06-1.61), and serene (OR, 1.25; 95% CI, 1.081.45) were significantly more likely to report the interview helpful. There was no relationship between stress and helpfulness.Conclusions: Terminally ill patients and their care-givers can discuss death, dying, and bereavement in a structured interview with minimal stress and report that the interview was helpful. Institutional review boards should not preemptively restrict surveys with terminally ill patients without reliable evidence that they will be stressful or otherwise harmful.