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

摘要 到目前为止，冠状病毒病2019(新冠肺炎)大流行已在美国造成100,000人死亡， 不成比例地影响易受影响的亚群，包括那些患有潜在严重疾病和 来自种族和少数民族群体的人。截至2020年6月，纽约市(NYC)已有1.6万人死亡 并且仍然是全球大流行的震中。尽管公共卫生控制和缓解政策 包括社交距离、感染控制和自我隔离被认为减少了传播 除了新冠肺炎，它们还极大地颠覆了人们寻求和获得医疗服务的方式， 尤其是那些身患重病的人。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，疼痛和疼痛)，在大流行期间将患者留在家里 呼吸困难)；为患者、照顾者和医疗保健专业人员提供心理支持；以及支持 复杂的决策。然而，关于新冠肺炎期间的临终关怀做法的证据很少，甚至更少 为美国各地的临终关怀组织改善准备提供指导。事实上，在经济衰退的高峰期 大流行，伴随着纽约市临终关怀需求的激增，我们经历了 提供临终关怀，暴露了现有系统在应对危机方面的潜在脆弱性 要求采取协调、同步的方法。在这项创新的混合方法研究中，我们寻求获得一个 深入了解新冠肺炎疫情期间纽约市提供临终关怀所面临的挑战 对患者、护理人员和医疗保健提供者的体验进行三角测量。具体地说，我们将把临床 记录患者在西奈山临床项目和社区临终关怀中遇到的情况，以创建纵向 大流行期间病人临终关怀的轨迹，以阐明获得临终关怀和 患者和家属在此期间所经历的护理协调不足。我们将加强这一点 对包括一线临床提供者在内的关键利益相关者进行深入访谈后获得的信息 计划领导力、工作人员和照顾者。我们对跨学科临终关怀人员的采访，将确定 安宁疗养院响应新冠肺炎制定的新政策和做法，障碍和促进者 实施、感知影响和可持续性。最后，通过全国临终关怀调查，我们将 确定美国各地政策和实践变化的实施情况。建议的项目 以其快速、混合的方法研究大流行期间高度脆弱的人群而创新 使用对以下方面的回顾和前瞻性数据分析，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。结果将为临终关怀如何提供新的科学知识 调整护理流程，以改善紧急情况下患者和家属的临终关怀，告知 开发教育工具以促进应急准备，并传播指导方针 安宁疗养院关于改善临终关怀的战略和适应。

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.