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

• 批准号: 10449348
• 负责人: MELISSA Diane ALDRIDGE
• 金额: $ 60.91万
• 依托单位: ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-07-12 至 2024-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10449348
• 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; Elderly; Emergency Situation; Enrollment; Ensure; 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; Readiness; Research; Role; SARS-CoV-2 transmission; Schools; Site; Social Distance; Surveys; Symptoms; System; Telephone; Time; United States; Visit; Vulnerable Populations; barrier to care; base; care coordination; death anxiety; end of life; end of life care; ethnic disparity; ethnic minority population; experience; health care disparity; hospice environment; implementation facilitators; improved; innovation; insight; older patient; pandemic disease; personal protective equipment; programs; prospective; psychologic; racial disparity; racial minority; response; socioeconomic disparity; symptom management; telehealth; televisit; tool

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.

摘要 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， 对脆弱亚群造成不成比例的影响，包括那些患有潜在严重疾病的人， 来自少数民族和种族群体的人。截至2020年6月，纽约市（NYC）已有1.6万人死亡 仍然是全球疫情的中心。尽管公共卫生遏制和缓解政策 包括社交距离，感染控制和自我隔离被认为可以减少传播 在COVID-19爆发后，它们还对个人寻求和获得护理的方式造成了重大破坏， 特别是那些患有严重疾病的人。临终关怀组织在支持重病患者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 呼吸困难）;对患者、护理人员和医疗保健专业人员的心理支持;以及 复杂的决策。然而，在COVID-19期间， 为美国各地的临终关怀组织提供指导，以提高准备工作。事实上， 随着纽约市临终关怀需求的激增，我们经历了 临终关怀服务，暴露出现有系统应对危机能力的潜在弱点， 需要一个协调一致的方法在这项创新的混合方法研究中，我们寻求获得一个 深入了解COVID-19大流行期间在纽约市提供临终关怀的挑战 对患者、护理人员和医疗保健提供者的经验进行三角测量。具体来说，我们将临床 记录西奈山临床项目和社区临终关怀的患者遭遇， 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， 在此期间，患者和家属经历的护理协调不足。我们将加强这一点 深入访谈关键利益相关者（包括一线临床提供者）的信息和见解， 项目领导、工作人员和护理人员。我们与跨学科临终关怀人员的访谈，将确定 为应对COVID-19而颁布的新政策和实践， 实施、感知影响和可持续性。最后，通过对收容所的全国调查，我们将 确定政策和实践变化的实施如何在美国各地变化。 创新的快速，混合方法的方法来研究一个高度脆弱的人群在流行病期间 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， 结合定性访谈。研究结果将有助于新的科学知识， 调整护理流程，以改善紧急情况下的患者和家庭临终护理， 开发教育工具，促进应急准备， 关于改善临终关怀的战略和调整的收容所。