Center to Advance Palliative Care at the Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, New York
Division of Pediatric Palliative Care, Department of Pediatrics and Rebecca D. Considine Research Institute, Akron Children's Hospital, Akron, Ohio.
Pediatrics. 2021 Jul;148(1). doi: 10.1542/peds.2020-021634. Epub 2021 Jun 28.
Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care programs over the past decade, little is known about the current operational features of PPC programs across the country.
The National Palliative Care Registry collects annualized data on palliative care programs' structures, processes, and staffing. Using data from the 2018 registry survey, we report on the operational features of inpatient PPC programs across the United States.
Fifty-four inpatient PPC programs submitted data about their operations. Programs reported a median of 3.8 full-time equivalent staff per 10 000 hospital admissions (range 0.7-12.1) across the core interdisciplinary team, yet few (37%) met the minimum standards of practice for staffing. Programs provided more annual consults if they were longer-standing, had more interdisciplinary full-time equivalent staff, offered 24/7 availability for patients and families, or were at larger hospitals. The majority of programs reported concern for burnout (63%) and an inability to meet clinical demand with available staffing (60%).
There is considerable variability in PPC program operations and structure in hospitals. This study affirms the need for updated program standards and guidelines, as well as research that describes how different care delivery models impact outcomes for patients, families, staff, and health care systems. Future studies that further define the clinical demand, workload, and sustainability challenges of PPC programs are necessary to foster the provision of high-quality PPC and maintain a vital clinical workforce.
儿科舒缓治疗（PPC）是照顾患有严重疾病的儿童的重要组成部分。尽管在过去十年中，已建立的舒缓治疗计划数量有所增加，但对于全国范围内 PPC 计划的当前运营特点却知之甚少。
国家舒缓护理注册中心收集有关舒缓护理计划的结构、流程和人员配备的年度数据。使用 2018 年注册调查的数据，我们报告了美国各地住院 PPC 计划的运营特点。
54 个住院 PPC 计划提交了有关其运营的数据。报告显示，核心跨学科团队中每 10000 例住院患者的全职等效员工中位数为 3.8 名（范围为 0.7-12.1），但很少（37%）达到人员配备的最低实践标准。如果计划更持久、有更多的跨学科全职等效员工、为患者和家属提供 24/7 的可用性，或者在更大的医院，则提供更多的年度咨询。大多数计划报告了对倦怠的关注（63%）和无法用现有的人员配置满足临床需求（60%）。
医院的 PPC 计划运营和结构存在很大差异。本研究证实了更新计划标准和指南的必要性，以及描述不同护理提供模式如何影响患者、家庭、员工和医疗保健系统的结果的研究的必要性。进一步定义 PPC 计划的临床需求、工作量和可持续性挑战的未来研究对于促进高质量 PPC 的提供和维持重要的临床劳动力是必要的。
