What matters most in end-of-life care: perceptions of seriously ill patients and their family members
What matters most in end-of-life care: perceptions of seriously ill patients and their family members
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DOI：
10.1503/cmaj.050626
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发表时间：
2006-02-28
影响因子：
14.6
通讯作者：
Lam, M
中科院分区：
文献类型：
--
作者：
Heyland, DK;Dodek, P;Lam, M
背景：我们对优质护理对患者及其家人意味着什么的初步了解阻碍了改善临终护理的举措。本研究的主要目的是描述医院中的重病患者及其家人认为优质临终关怀的关键要素是什么。方法：在根据现有文献、专家焦点小组和患者访谈得出与优质临终关怀相关的 28 个要素清单后，我们对加拿大 5 家医院的晚期癌症和慢性终末期医学疾病老年患者及其家人进行了面对面的问卷调查，以评估他们对其重要性的看法。我们比较了不同亚组患者和家庭成员的评分差异。结果：在 569 名符合条件的患者和 176 名家庭成员中，440 名患者 (77%) 和 160 名亲属 (91%) 同意参与。患者最常认为“极其重要”的要素是“对照顾您的医生有信任和信心”（55.8％的受访者），“当有意义的康复希望渺茫时，不要依靠生命支持来维持生命”（55.7％），“您的医生以诚实的方式向您传达有关您的疾病的信息”（44.1％）和“完成事情并为生命的临终审查做好准备，解决冲突，说再见”（43.9%）。在许多护理要素方面，患者群体之间以及患者及其家人之间的重要性评级存在显着差异。解释：重病患者和家人已经定义了与优质临终护理相关的各种要素的重要性。最重要的要素涉及对治疗医生的信任、避免不必要的生命支持、有效的沟通、护理的连续性和生命的完整性。对最重要事项的看法存在差异，表明需要采用定制或个性化的方法来提供临终关怀。
Background: Initiatives to improve end-of-life care are hampered by our nascent understanding of what quality care means to patients and their families. The primary purpose of this study was to describe what seriously ill patients in hospital and their family members consider to be the key elements of quality end-of-life care.Methods: After deriving a list of 28 elements related to quality end-of-life care from existing literature, focus groups with experts and interviews with patients, we administered a face-to-face questionnaire to older patients with advanced cancer and chronic end-stage medical disease and their family members in 5 hospitals across Canada to assess their perspectives on the importance. We compared differences in ratings across various subgroups of patients and family members.Results: Of 569 eligible patients and 176 family members, 440 patients (77%) and 160 relations (91%) agreed to participate. The elements rated as "extremely important" most frequently by the patients were "To have trust and confidence in the doctors looking after you" (55.8% of respondents), "Not to be kept alive on life support when there is little hope for a meaningful recovery" (55.7%), "That information about your disease be communicated to you by your doctor in an honest manner" (44.1%) and "To complete things and prepare for life's end-life review, resolving conflicts, saying goodbye" (43.9%). Significant differences in ratings of importance between patient groups and between patients and their family members were found for many elements of care.Interpretation: Seriously ill patients and family members have defined the importance of various elements related to quality end-of-life care. The most important elements related to trust in the treating physician, avoidance of unwanted life support, effective communication, continuity of care and life completion. Variation in the perception of what matters the most indicates the need for customized or individualized approaches to providing end-of-life care.