Patrick Donald L, Curtis J Randall, Engelberg Ruth A, Nielsen Elizabeth, McCown Ellen
University of Washington and Harborview Medical Center, Seattle 98195-7660, USA.
Ann Intern Med. 2003 Sep 2;139(5 Pt 2):410-5. doi: 10.7326/0003-4819-139-5_part_2-200309021-00006.
Improving end-of-life experience is a major challenge to successful aging. Deaths that are reasonably free of discomfort, in accordance with patients' wishes, and within acceptable professional and ethical standards are high-quality deaths. The authors developed a 31-item measure of the quality of dying and death and applied it in a community sample and a sample of hospice enrollees. Scores on the Quality of Dying and Death Instrument and measures of perceived quality of care were collected from patients' loved ones after death. Higher overall after-death ratings of the quality of care received from all providers and from physicians were associated with higher-quality dying and death. How well patients' symptoms were controlled in the community study and how well wishes were followed and treatments were explained in the hospice study were associated with higher-quality dying. Major challenges to end-of-life research include recruiting representative population samples, given widespread reluctance of patients and loved ones to participate in research at the end of life; important variation in evaluations among different reporters after death; reluctance of loved ones to assign negative evaluations to dying experiences after death; and the highly individual and dynamic nature of dying experiences. Overcoming these challenges is of great importance in the search for the social, organizational, and individual determinants of high-quality dying in the U.S. cultural and health care context.
改善临终体验是成功老龄化面临的一项重大挑战。在符合患者意愿且处于可接受的专业和道德标准范围内，尽可能减少不适的死亡才是高质量的死亡。作者开发了一项包含31个条目的临终及死亡质量测量工具，并将其应用于一个社区样本和一组临终关怀登记者样本。在患者去世后，从其亲人那里收集了临终及死亡质量工具的得分以及对所感知到的护理质量的测量结果。所有提供者和医生提供的护理在患者去世后的总体评分越高，临终及死亡质量就越高。在社区研究中患者症状的控制情况，以及在临终关怀研究中患者意愿的遵循情况和治疗的解释情况，都与更高质量的临终状态相关。临终研究面临的主要挑战包括招募具有代表性的人群样本，因为患者及其亲人普遍不愿在生命末期参与研究；不同报告者在患者去世后的评估存在重要差异；亲人不愿在患者去世后对临终体验给出负面评价；以及临终体验具有高度个体化和动态化的特点。在美国文化和医疗背景下，克服这些挑战对于探寻高质量临终的社会、组织和个体决定因素至关重要。
