Maust Donovan T, Blass David M, Black Betty S, Rabins Peter V
Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, U.S.A.
Int Psychogeriatr. 2008 Apr;20(2):406-18. doi: 10.1017/S1041610207005807. Epub 2007 Sep 10.
Dementia differs from other terminal illnesses both in its slow progression and the fact that patients and family members often do not perceive it as a cause of death. Furthermore, because decisional incapacity is almost universal in patients with advanced dementia, decisions must be made by surrogates. However, little is known about the factors that influence how surrogates make decisions for persons with late-stage dementia.
The setting was the first wave of a study of patients with advanced dementia in three Maryland nursing homes (The Care of Nursing Home Residents with Advanced Dementia Study). Of 125 consented participants, 123 residents and their surrogates provided adequate information and agreed to interviews and medical record reviews. Bivariate analysis and logistic regression models were used to explore whether variables related to demographics, illness, communication and surrogate background were associated with surrogate decisions to not provide aggressive treatments (i.e. hospitalization or surgery).
Treatment decisions regarding aggressive medical care had been made by 81% of surrogates over the preceding 6 months. In bivariate analysis the following factors were significantly associated with not providing aggressive care: resident and surrogate of white race, older surrogate age, worse resident medical illness, worse surrogate perception of resident quality of life, presence of a 'do not hospitalize' order (DNH), and more contact with nurses. In the multivariate analysis, resident white race and presence of a DNH were significant predictors of surrogate decisions to not provide aggressive treatments. Treatment decisions were not associated with surrogate relationship or religiosity.
Treatment decisions for individuals with advanced dementia are mostly strongly associated with the patient's race and presence of DNH and less so with changeable features of illness or environment.
痴呆症与其他晚期疾病不同,其进展缓慢,而且患者及其家属通常并不认为它是导致死亡的原因。此外,由于晚期痴呆症患者几乎普遍存在决策能力丧失的情况,因此必须由替代决策者做出决定。然而,对于影响替代决策者如何为晚期痴呆症患者做出决策的因素,我们知之甚少。
研究背景为马里兰州三家养老院对晚期痴呆症患者进行的首批研究(晚期痴呆症养老院居民护理研究)。在125名同意参与的参与者中,123名居民及其替代决策者提供了充分信息,并同意接受访谈和病历审查。采用双变量分析和逻辑回归模型,探讨与人口统计学、疾病、沟通及替代决策者背景相关的变量,是否与替代决策者不提供积极治疗(即住院或手术)的决定有关。
在过去6个月里,81%的替代决策者做出了关于积极医疗护理的治疗决定。双变量分析显示,以下因素与不提供积极护理显著相关:居民和替代决策者为白人种族、替代决策者年龄较大、居民病情较重、替代决策者对居民生活质量的感知较差、存在“不要住院”医嘱(DNH)以及与护士接触较多。多变量分析中,居民为白人种族和存在DNH是替代决策者不提供积极治疗决定的显著预测因素。治疗决定与替代决策者的关系或宗教信仰无关。
晚期痴呆症患者的治疗决定大多与患者的种族和DNH的存在密切相关,而与疾病或环境的可变特征关系较小。