DEPRESSION AND END OF LIFE CARE IN ALS

描述：（改编自研究者摘要）肌萎缩侧索硬化 硬化症（ALS）是一种进行性神经退行性疾病， 死亡，通常死于呼吸功能不全或吸入，在3至5年内 多年的诊断。这种疾病影响除眼睛以外的所有随意运动功能 运动和括约肌控制。在生命的最后6-9个月，患者必须 选择（明确或默认）姑息或气管造口术， 长期机械通气（LTMV）。在这个为期4年的项目中，我们将遵循 140名确诊或可能患有ALS的患者， 6-9个月内死亡，定义为肺功能不良、吞咽困难 和减肥，或者临终关怀证书或资格。这些患者将 随后进行每两个月一次的家庭评估，并增加 在生命的最后几周进行评估。我们还将采访主要家庭 护理人员在同一时间表和一次病人的死亡，以及 开展一项关于医疗服务提供者对临终决策影响的调查。在 在这项观察性队列研究中，我们建议（1）评估患病率， ALS患者最后几个月的抑郁障碍和症状病程 生命的意义及其对生命结束时决策的相关性;（2） 确定气管切开术/LTMV使用的预测因素;（3）检查 患者和家属采取哪些措施来控制死亡时间， 采取严格的姑息治疗制度;（4）审查协会 在生命的最后几个月里，病人和照顾者之间的痛苦。关键 问题包括以下几个方面：苦恼和抑郁症状的程度 随着患者接近死亡而增加，这种关系是否不同 根据姑息治疗或LTMV的选择？是什么让这些 从医学角度来说，他们的病已经无可救药了。在接受了 LTMV，LTMV有意识地计划的比例是多少，而不是 计划外的紧急程序患者心理健康或护理人员负担 与放弃或接受LTMV的决定有关吗在多大程度上使用 非侵入性暂时性鼻通气（Bi-Pap）是否可预防使用LTMV？这些 这些问题尚未在前瞻性研究中进行调查。我们将能够 通过对患者和护理人员进行反复、详细的评估来解决这些问题。 这些信息对于了解患者的经历至关重要 他们和他们的家人面临着临终关怀 决策

Description: (Adapted from investigator's abstract) Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that results in death, usually from respiratory insufficiency or aspiration, within 3 to 5 years of diagnosis. The disease affects all voluntary motor function except eye movement and sphincter control. In the final 6-9 months of life, patients must choose (either explicitly or by default) palliation or tracheostomy and long-term mechanical ventilation (LTMV). In this 4 year project, we will follow 140 patients diagnosed with definite or probable ALS who face a high likelihood of death within 6-9 months, as defined by poor pulmonary function, dysphagia and weight loss, or hospice certification or eligibility. These patients will be followed with bimonthly in-home assessments, and with an additional assessment in the last weeks of life. We will also interview the primary family caregiver on the same schedule and once after the patient's death, as well as conduct a survey of medical providers' influence on end-of-life decisions. In this observational cohort study, we propose (1) to assess the prevalence and course of depressive disorders and symptoms in ALS patients in the final months of life and its relevance for decision-making at the end of life; (2) to identify predictors of tracheostomy/LTMV use; (3) to examine the degree to which patients and families take steps to control the timing of death by adopting a strict palliative care regime; and (4) to examine associations between patient and caregiver distress in the final months of life. Key questions include the following: Do levels of distress and depressive symptoms increase as patients approach death, and does this relationship differ according to choice of palliative care or LTMV? What maintains hope in these patients, who are, in a medical sense, hopelessly ill? Of patients who receive LTMV, in what proportion is LTMV consciously planning for, as opposed to an unplanned emergency procedure? Is patient mental health or caregiver burden associated with decisions to forego or undergo LTMV? To what degree does use of non-invasive, temporary nasal ventilation (Bi-Pap) prevent use of LTMV? These questions have not been investigated in a prospective study. We will be able to address them through repeated, detailed assessments of patients and caregivers. This information will be critical for understanding the experience of patients with terminal disease as they and their families face end-of-life care decisions.