Pediatric Palliative Care, Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, Berman Institute of Bioethics, 200 N. Wolfe St, Baltimore, MD, 21287, USA.
Semin Fetal Neonatal Med. 2023 Aug;28(4):101446. doi: 10.1016/j.siny.2023.101446. Epub 2023 Apr 20.
The sickest of NICU survivors develop chronic critical illness (CCI). Most infants with CCI will leave the NICU using chronic medical technology and will experience repeated rehospitalizations. The unique issues for these NICU graduates- escalating chronic medical technologies, fractured post-NICU healthcare, gaps in home health services, and family strain-are common and predictable. This means that raising family and NICU team awareness of these issues, and putting plans in place to address them, should occur for every NICU infant with CCI. Pediatric palliative care is one resource that can be engaged within the NICU to support the child and family through NICU discharge and beyond. This review examines what is known about the unique needs of infants who leave the NICU with CCI and the role that NICU-initiated palliative care involvement can play for these patients, families, clinicians, and the health care system.
最病重的新生儿重症监护病房幸存者会发展为慢性危重症(CCI)。大多数患有 CCI 的婴儿将使用慢性医疗技术离开新生儿重症监护病房,并经历反复住院。这些新生儿重症监护病房毕业生的独特问题——不断增加的慢性医疗技术、断裂的新生儿重症监护病房后医疗保健、家庭健康服务的差距和家庭紧张——是常见且可预测的。这意味着,对于每一个患有 CCI 的新生儿重症监护病房婴儿,都应该提高家庭和新生儿重症监护病房团队对这些问题的认识,并制定计划来解决这些问题。儿科姑息治疗是一种可以在新生儿重症监护病房内使用的资源,通过它可以为儿童和家庭提供支持,帮助他们度过新生儿重症监护病房出院阶段以及之后的阶段。这篇综述考察了离开新生儿重症监护病房时患有 CCI 的婴儿的独特需求,以及新生儿重症监护病房发起的姑息治疗参与对这些患者、家庭、临床医生和医疗保健系统可能起到的作用。