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.

项目摘要摘要 面临晚期严重疾病的患者在医疗护理方面有许多复杂的决定。 选项范围涵盖了最激进的寿命延长护理，主要集中在舒适度上。 1997年，《尊严死亡法》被通过使俄勒冈州死亡的医疗援助合法化。 自那时以来，其他11个州通过了女佣法律，其他12个州正在考虑类似的立法。然而 尽管患者可能需要使用宽大的访问权限，但关于患者的研究很少 围绕女仆做出决策的经验以及衰老如何影响这些决策。我们也缺乏数据 关于看护人的经验和成果，以及参与参与的临床医生的经验 照顾追求女仆的患者。为了解决我们的理解中这些关键差距，我们建议 从国家样本及其护理人员追捕女仆的患者的纵向队列研究 和临床医生。目标1：了解重病和年轻的定量和定性结果 追求女仆的人和随后使用女仆相关的患者级别因素。目标2： 了解老年和年轻患者的照料者的定量和定性结果 追求女仆。目标3：定性地检查开处方的临床医生的参加和经历 照顾考虑女仆的患者。 这项研究具有很高的创新性 他们的照顾者并跟随他们前进。我们将一个经验丰富且多学科的团队组成 在姑息治疗中表现出的协作和专业知识的记录的调查员 研究和生物伦理学。不理解患者，看护人和临床医生的潜水者观点， 我们无法创建或实施干预措施来支持这些人群。鉴于人口广泛 可以访问个人的女佣，流行病学，实验性和决策特征 考虑和追求女仆对于为循证政策和实践提供信息至关重要。