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 面对晚期严重疾病的患者在医疗护理方面需要做出许多复杂的决定。 选择范围涵盖了最积极的延长生命的护理，以照顾，主要是集中在舒适。 1997年，《尊严死亡法》通过，使俄勒冈州的临终医疗援助合法化。 从那时起，其他11个州已经通过了MAiD法律，另有12个州正在考虑类似的立法。然而 尽管患者可以广泛使用这种选择，但关于患者的研究很少。 关于MAiD决策的经验以及衰老如何影响这些决策。我们也缺乏数据 关于护理人员的经验和结果，以及参与治疗的临床医生的经验， 对追求MAiD的患者的护理。为了解决我们认识上的这些关键差距，我们建议进行一次 对全国样本中正在寻求MAiD的患者及其护理人员进行的纵向队列研究 和临床医生。目的1：了解老年和年轻重症患者的定量和定性结果 寻求MAID的人和与随后使用MAiD相关的患者水平因素。目标二： 了解老年和年轻患者照顾者的定量和定性结果 追踪MAiD目的3：定性地检查临床医生开处方的态度和经验， 照顾考虑MAiD的患者。 这项研究是高度创新的，因为我们将捕获一个国家的患者队列前MAiD以及 他们的照顾者并跟随他们前进。我们汇集了一个经验丰富，多学科的团队， 在姑息治疗方面具有良好合作记录和专业知识的研究者 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， 我们无法制定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MAiD、流行病学、经验和个人决策特征 考虑和推行MAiD可能对告知循证政策和实践至关重要。

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.