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

患者临终决策轨迹：MAID 的流行病学探索及其对护理人员和临床医生的影响

• 批准号: 10539641
• 负责人: STACY M FISCHER
• 金额: $ 73.24万
• 依托单位: UNIVERSITY OF COLORADO DENVER
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-01 至 2027-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10539641
• 关键词: Academy; Address; Adopted; Advocate; Affect; Aging; American; American Medical Association; Assisted Suicide; Attitude; Bioethics; California; Caregivers; Caring; Cause of Death; Characteristics; Collaborations; Colorado; Communities; Complex; Congresses; Counseling; Data; Death Certificates; Death with Dignity; Decision Making; District of Columbia; Dose; Elderly; Emotional; Epidemiology; Ethics; Euthanasia; Face; Family; Family Caregiver; Family member; Funding; Goals; Hawaii; Health; Hospitals; Human; Human Characteristics; Individual; Intention; Intervention; Justice; Knowledge; Laws; Lead; Legal; Life; Literature; Longitudinal cohort; Longitudinal cohort study; Maine; Medical; Morals; Neurology; New Jersey; New Mexico; Oregon; Outcome; Palliative Care; Participant; Patient Care; Patients; Persons; Pharmaceutical Preparations; Physician' s Role; Physicians; Policies; Population; Positioning Attribute; Privacy; Process; Professional Organizations; Prognosis; Provider; Religion and Spirituality; Religious Belief; Research; Research Personnel; Research Project Grants; Resuscitation; Sampling; Services; Statutes and Laws; Suicide; Surveys; Time; United States National Institutes of Health; Vermont; Washington; cohort; end of life; end of life care; evidence base; experience; functional decline; hospice environment; innovation; multidisciplinary; public health insurance

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.

项目概要 摘要 患有晚期严重疾病的患者需要就其医疗护理做出许多复杂的决定。 选项范围涵盖最积极的延长生命护理和主要关注舒适度的护理。 1997 年，俄勒冈州通过了《尊严死亡法案》，使死亡医疗援助 (MAiD) 合法化。 自那时起，其他 11 个州已经通过了 MAiD 法律，另外 12 个州正在考虑类似的立法。 尽管患者可能有这种选择的广泛途径，但关于患者的情况的研究却很少。 关于 MAiD 的决策经验以及老龄化如何影响这些决策我们也缺乏数据。 关于照顾者的经验和成果，以及参与该计划的主教的经验 为了解决我们理解中的这些关键差距，我们建议开展一项研究 对全国样本中追求 MAiD 的患者及其纵向护理人员进行队列研究 目标 1：了解重病老年人和年轻人的定量和定性结果 追求 MAID 的人员以及与随后使用 MAiD 目标 2 相关的患者层面因素。 了解老年和年轻患者护理人员的定量和定性结果 追求 MAiD 目标 3：定性检查专家处方和治疗的态度和经验。 照顾考虑 MAiD 的患者。 这项研究具有高度创新性，因为我们将收集 MAiD 前以及 MAiD 前的全国患者队列。 我们汇集了一支经验丰富的多学科团队，并跟随他们前进。 在姑息治疗方面拥有良好合作记录和专业知识的研究人员 如果不了解患者、护理人员和支持者的不同观点， 鉴于人口众多，我们无法制定或实施干预措施来支持这些人群。 可以获取个人的 MAiD、流行病学、经验和决策特征 考虑和追求 MAiD 对于为基于证据的政策和实践提供信息可能至关重要。