Department of Public Health and Primary Care,Leiden University Medical Center,Leiden,the Netherlands.
End-of-Life Care Research Group,Vrije Universiteit Brussels and Ghent University,Brussels,Belgium.
Palliat Support Care. 2017 Oct;15(5):587-599. doi: 10.1017/S1478951516000985. Epub 2017 Jan 23.
Our aim was to describe physicians' perceptions of the suffering of their patients who are dying with dementia, many of whom are incompetent with regard to decision making and have difficulty with communicating about the source of their distress and with identifying related factors.
We analyzed data from the nationally representative observational Dutch End-of-Life in Dementia (DEOLD) cohort study (2007-2011), which involved 34 long-term care facilities. A total of 103 physicians completed questionnaires about 330 patients with dementia who had died in a participating facility. Suffering during the last six hours of life was defined as "a patient being disturbed by or aware of symptoms," "suffering until the end or death was a struggle"-all related to objective indicators of lack of comfort. We employed generalized estimating equation models to assess associations of suffering with the characteristics of physicians and patients, the patient's death, and the decision-making process.
In 13.8% of cases, the physician felt that the patient had suffered. An unexpected death and death with pneumonia were strongly (an odds ratios close to 6) associated with suffering, and suffering was also independently associated with the physician's perception of worse quality of end-of-life care, death with cardiovascular disease, a less experienced physician, no palliative sedation, and a younger patient.
Most patients with dementia did not suffer during their final hours of life, according to their physicians. There are a number of factors associated with suffering, among them death with pneumonia and unexpected death. We may not be able to have much influence on death from pneumonia, but quality of care and an unexpected death are reasonable targets for intervention. Earlier identification of the beginning of the dying process would allow time to better prepare for approaching death, which would provide a source of comfort.
本研究旨在描述医生对患有痴呆症且即将死亡的患者的痛苦的感知，这些患者中许多人在决策方面存在障碍，难以表达痛苦的根源，并识别相关因素。
我们分析了来自全国代表性的荷兰临终痴呆症（DEOLD）观察性队列研究（2007-2011 年）的数据，该研究涉及 34 家长期护理机构。共有 103 名医生完成了有关在参与机构死亡的 330 名痴呆症患者的问卷。生命的最后六小时内的痛苦被定义为“患者受到症状困扰或意识清醒”、“痛苦持续到结束或死亡是一场挣扎”——所有这些都与缺乏舒适的客观指标有关。我们采用广义估计方程模型来评估痛苦与医生和患者特征、患者死亡和决策过程之间的关联。
在 13.8%的情况下，医生认为患者经历了痛苦。意外死亡和肺炎相关死亡与痛苦强烈相关（接近 6 的比值比），痛苦也与医生对生命末期护理质量较差、心血管疾病相关死亡、经验较少的医生、无姑息性镇静和年轻患者的感知独立相关。
根据医生的说法，大多数痴呆症患者在生命的最后几个小时没有经历痛苦。有许多因素与痛苦相关，包括肺炎相关死亡和意外死亡。我们可能无法对肺炎相关死亡产生太大影响，但护理质量和意外死亡是合理的干预目标。更早地识别临终过程的开始将为更好地为接近死亡做准备提供时间，这将成为舒适的来源。
