临终关怀中最重要的事情：重症患者及其家属的看法。
What matters most in end-of-life care: perceptions of seriously ill patients and their family members.
作者信息
Heyland Daren K, Dodek Peter, Rocker Graeme, Groll Dianne, Gafni Amiram, Pichora Deb, Shortt Sam, Tranmer Joan, Lazar Neil, Kutsogiannis Jim, Lam Miu
机构信息
Department of Medicine, Kingston General Hospital, Kingston, Ont.
出版信息
CMAJ. 2006 Feb 28;174(5):627-33. doi: 10.1503/cmaj.050626.
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.
背景
我们对优质护理对患者及其家属意味着什么的初步理解，阻碍了改善临终护理的举措。本研究的主要目的是描述住院的重症患者及其家属认为优质临终护理的关键要素是什么。
方法
从现有文献、专家焦点小组讨论以及患者访谈中得出与优质临终护理相关的28项要素清单后，我们对加拿大5家医院的晚期癌症老年患者、慢性终末期疾病患者及其家属进行了面对面问卷调查，以评估他们对这些要素重要性的看法。我们比较了不同患者和家属亚组在评分上的差异。
结果
在569名符合条件的患者和176名家属中，440名患者（77%）和160名家属（91%）同意参与。患者最常评为“极其重要”的要素是“对照顾你的医生有信任”（55.8%的受访者）、“在几乎没有有意义康复希望时不依靠生命维持系统维持生命”（55.7%）、“医生以诚实的方式向你传达有关你疾病的信息”（44.1%）以及“完成事情并为生命终结做准备——回顾人生、解决冲突、道别”（43.9%）。在许多护理要素方面，患者群体之间以及患者与其家属之间在重要性评分上存在显著差异。
解读
重症患者及其家属明确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主治医生的信任、避免不必要的生命维持、有效的沟通、护理的连续性以及生命的终结。对最重要事项的认知差异表明，需要采用定制化或个性化的方法来提供临终护理。
Zotero 插件