Decision trajectories of patients at the end of life: An epidemiological exploration of MAID and the impact on caregivers and clinicians

项目摘要摘要 面临晚期严重疾病的患者在医疗保健方面需要做出许多复杂的决定。 选择范围从最积极的生命延长护理到主要关注舒适性的护理。 1997年，俄勒冈州通过了《有尊严的死亡法案》，使临终医疗救助(女佣)合法化。 自那时以来，其他11个州已经通过了女佣法律，其他12个州正在考虑类似的立法。还没有 尽管患者可能不得不广泛使用这种选择，但关于患者的研究很少 与女佣有关的决策经验，以及年龄如何影响这些决策。我们也缺乏数据 关于护理人员的经历和结果，以及参与治疗的临床医生的经验 照顾追求女佣的病人。为了解决我们理解中的这些严重差距，我们建议进行一项 从全国样本中寻找女佣的患者及其照顾者的纵向队列研究 和临床医生。目标1：了解年长和年幼的重病患者的数量和质量结果 追求女佣的人以及与随后使用女佣相关的患者层面的因素。目标2： 了解年长患者和年轻患者照顾者的数量和质量结果 追女佣。目的3：定性检查临床医生开处方和治疗的态度和经验。 照顾考虑女佣的病人。 这项研究具有很高的创新性，因为我们将捕捉到全国范围内的未成年患者和 他们的照顾者并跟随他们前进。我们汇聚了一支经验丰富、多学科的团队 在姑息治疗领域拥有良好合作和专业知识记录的调查人员 研究和生物伦理学。如果不了解患者、护理人员和临床医生的不同观点， 我们无法创建或实施干预措施来支持这些人口。鉴于人口众多， 能够接触到女佣、流行病学、经验性和个人决策特征的人 考虑和追查女佣可能是为循证政策和实践提供信息的关键。

Project Summary Abstract Patient facing advanced serious illness have many complex decisions to make regarding their medical care. The range of options spans the most aggressive life prolonging care to care that is focused mainly on comfort. In 1997, the Death with Dignity Act was passed legalizing Medical Aid in Dying (MAiD) for the state of Oregon. Since that time, 11 other states have passed MAiD laws and 12 others are considering similar legislation. Yet despite the widespread access patients may have to this option, there is a paucity of research about patient’s experiences with decision making around MAiD and how aging may affect these decisions. We also lack data about the experiences and outcomes for caregivers, and the experiences of clinicians who are involved in the care of patients pursuing MAiD. To address these critical gaps in our understanding, we propose to conduct a longitudinal cohort study of patients who are pursuing MAiD from a national sample as well as their caregivers and clinicians. Aim 1: To understand quantitative and qualitative outcomes of seriously ill older and younger persons pursuing MAID and the patient-level factors that are associated with subsequently using MAiD. Aim 2: To understand the quantitative and qualitative outcomes of caregivers of older and younger patients pursuing MAiD. Aim 3: To qualitatively examine the attitudes and experiences of clinicians prescribing and caring for patients considering MAiD. This research is highly innovative because we will capture a national cohort of patients pre-MAiD as well as their caregivers and follow them forward. We bring together a highly experienced and multi-disciplinary team of investigators who have a demonstrated track record of collaboration and expertise across palliative care research and bioethics. Without understanding the diverse perspectives of patients, caregivers, and clinicians, we are unable to create or implement interventions to support these populations. Given the broad population that has access to MAiD, epidemiologic, experiential, and decision-making characteristics of individuals considering and pursuing MAiD may be critical to inform evidence-based policies and practices.