DEPRESSION AND END OF LIFE CARE IN ALS

描述：(改编自研究者摘要)肌萎缩侧索硬化症 硬化症(ALS)是一种进行性神经退行性疾病，导致 死亡，通常是由于呼吸功能不全或吸入，在3至5分钟内死亡 多年的诊断。这种疾病会影响除眼睛以外的所有自主运动功能。 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)姑息或气管切开术 长期机械通气(LTMV)。在这个四年的项目中，我们将遵循 140名确诊或可能患有肌萎缩侧索硬化症的患者 6-9个月内死亡，定义为肺功能不佳，吞咽困难 和减肥，或临终关怀认证或资格。这些病人会 之后每两个月进行一次上门评估，并另外 在生命的最后几周进行评估。我们还将采访主要家庭 照顾者在相同的时间表上，在病人死后一次，以及 对医疗提供者对临终决策的影响进行调查。在……里面 这项观察性队列研究，我们建议(1)评估患病率和 肌萎缩侧索硬化症患者最后几个月抑郁障碍的病程和症状 生命及其与临终决策的相关性；(2) 确定气管切开/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；及(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。钥匙 问题包括：痛苦程度和抑郁症状 随着患者临近死亡而增加，这种关系是否有所不同 根据姑息治疗还是LTMV的选择？是什么让人们对此抱有希望 病人，谁在医学意义上是无可救药的病人？接受治疗的患者的比例 LTMV，LTMV有意识地计划的比例，与 计划外的紧急程序？是患者的心理健康还是照顾者的负担 与放弃或接受LTMV的决定有关？在多大程度上使用 无创、临时鼻腔通气(BiPap)能阻止LTMV的使用吗？这些 这些问题还没有在前瞻性研究中进行调查。我们将能够 通过对患者和照顾者进行反复、详细的评估来解决这些问题。 这些信息对于理解患者的经历是至关重要的 患有晚期疾病，因为他们和他们的家人面临临终关怀 决定。

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.