The Impact of COVID-19 on End-of-Life Care for Vulnerable Populations

COVID-19 对弱势群体临终关怀的影响

基本信息

批准号：
10598634
负责人：
MELISSA Diane ALDRIDGE
金额：
$ 49.04万
依托单位：
ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
依托单位国家：
美国
项目类别：
财政年份：
2021
资助国家：
美国
起止时间：
2021-07-12 至 2025-03-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10598634
关键词：
Address Admission activity Area Businesses COVID-19 COVID-19 impact COVID-19 pandemic COVID-19 stress Caregivers Caring Cessation of life Clinical Communities Complex Consult Containment Contracts Data Decision Making Development Dyspnea Education Elderly Emergency Situation Enrollment Ensure Ethnic Origin Failure Family Family Caregiver Fright Future Geriatrics Goals Health Personnel Health Professional Health Services Accessibility Health system Healthcare Height Home Home visitation Hospice Care Hospitals Human Resources Individual Infection Control Interview Knowledge Leadership Link Medical Methods Modeling New York City Oxygen Pain Pain management Palliative Medicine Patient Care Patients Persons Play Police Policies Preparation Process Provider Public Health Quarantine Race Readiness Research Role SARS-CoV-2 transmission Schools Site Social Distance Surveys Symptoms System Telephone Time United States Visit Vulnerable Populations barrier to care care coordination care seeking death anxiety emergency preparedness end of life end of life care ethnic minority population experience future pandemic health care disparity hospice environment implementation facilitators improved innovation insight older patient pandemic disease personal protective equipment programs prospective psychologic racial minority population response socioeconomic disparity symptom management telehealth televisit tool

项目摘要

Abstract The Coronavirus Disease 2019 (COVID-19) pandemic has thus far caused 100,000 deaths in the U.S. and has disproportionately impacted vulnerable subpopulations, including those with underlying serious illness and those from racial and ethnic minority groups. As of June 2020, New York City (NYC) has seen 16,000 deaths and remains the global epicenter of the pandemic. Although public health containment and mitigation policies including social distancing, infection control, and self-quarantine are considered to have reduced transmission of COVID-19, they also brought about significant disruption in the way individuals sought and accessed care, particularly those with serious illness. Hospice organizations have played a key role in supporting seriously ill patients in their homes throughout the pandemic by ensuring effective symptom management (e.g., pain and dyspnea); psychological support for patients, caregivers, and healthcare professionals; and support for complex decision-making. Yet there has been scant evidence on hospice practices during COVID-19 and less guidance for hospice organizations throughout the U.S. to improve preparedness. Indeed, at the height of the pandemic, concomitant with the surge in demand for hospice care in NYC, we experienced a shortfall in hospice delivery, exposing latent vulnerabilities in the capacity of the existing system to respond to a crisis that demanded a coordinated, synchronized approach. In this innovative mixed methods study, we seek to gain an in-depth understanding of the challenges of delivering end-of-life care in NYC during the COVID-19 pandemic triangulating the experiences of patients, caregivers, and healthcare providers. Specifically, we will link clinical notes of patient encounters across Mount Sinai clinical programs and community hospice to create longitudinal trajectories of patients’ end-of-life care during the pandemic to elucidate barriers in access to hospice care and care coordination deficiencies experienced by patients and families during this time. We will augment this information with insights from in-depth interviews of key stakeholders including frontline clinical providers, program leadership, staff, and caregivers. Our interviews with interdisciplinary hospice personnel, will identify new policies and practices hospices enacted in response to COVID-19, barriers and facilitators to implementation, perceived impact, and sustainability. Finally, through a national survey of hospices, we will determine how implementation of policy and practice changes varied across the U.S. The proposed project is innovative for its rapid, mixed methods approach to studying a highly vulnerable population during a pandemic to inform current and future care planning and policy, using analyses of retrospective and prospective data in combination with qualitative interviewing. Results will contribute new scientific knowledge as to how hospices adapted care processes to improve patient and family end-of-life care during an emergency, inform the development of educational tools to promote emergency preparedness, and dissemination of guidance for hospices regarding strategies and adaptations to improve end-of-life care.

抽象的 2019 年冠状病毒病 (COVID-19) 大流行迄今已在美国造成 10 万人死亡，弱势群体受到的影响尤为严重，包括那些患有潜在严重疾病和截至 2020 年 6 月，纽约市 (NYC) 已有 16,000 人死亡。尽管采取了公共卫生遏制和缓解政策，但仍然是全球大流行的中心。包括社交距离、感染控制和自我隔离被认为减少了传播 COVID-19 的影响，它们还对个人寻求和获得护理的方式造成了重大干扰，特别是那些患有严重疾病的人，临终关怀组织在支持重病方面发挥了关键作用。通过确保有效的症状管理（例如疼痛和症状），在整个大流行期间在家中患者呼吸困难）；为患者、护理人员和医疗保健专业人员提供心理支持；然而，关于 COVID-19 期间临终关怀实践的证据却很少。确实，在疫情高峰期，为美国各地的临终关怀组织提供了改善准备的指导。大流行，伴随着纽约市临终关怀需求的激增，我们经历了资金短缺临终关怀服务暴露了现有系统应对危机能力中的潜在弱点需要一种协调、同步的方法。在这项创新的混合方法研究中，我们寻求获得一种方法。深入了解 COVID-19 大流行期间在纽约市提供临终关怀的挑战具体来说，我们将通过三角测量患者、护理人员和医疗保健提供者的经验来联系临床。西奈山临床项目和社区临终关怀中心的患者遭遇记录，以创建纵向记录大流行期间患者临终关怀的轨迹，以阐明获得临终关怀的障碍和我们将弥补患者和家属在此期间遇到的护理协调缺陷。来自对包括一线临床提供者在内的主要利益相关者的深入访谈的见解的信息，我们与跨学科临终关怀人员的访谈将确定项目领导、工作人员和护理人员。为应对 COVID-19 而制定的临终关怀新政策和做法、障碍和促进因素最后，通过全国临终关怀调查，我们将了解实施情况、感知影响和可持续性。确定美国各地政策和实践变化的实施情况如何变化。拟议的项目是因其在大流行期间研究高度脆弱人群的快速、混合方法而具有创新性通过对回顾性和前瞻性数据的分析，为当前和未来的护理规划和政策提供信息与定性访谈相结合，结果将为临终关怀提供新的科学知识。调整护理流程，以改善紧急情况下患者和家人的临终护理，通知开发教育工具以促进应急准备并传播指导临终关怀机构制定改善临终关怀的策略和调整。