Lago Paola, Cavicchiolo Maria Elena, Rusalen Francesca, Benini Franca
Neonatal Intensive Care Unit, Ca' Foncello Hospital, Treviso, Italy.
Department of Woman and Child Health, Neonatal Intensive Care Unit, University of Padua, Padua, Italy.
Front Pediatr. 2020 Dec 3;8:596744. doi: 10.3389/fped.2020.596744. eCollection 2020.
The aim of this study is to assess the most significant Perinatal Palliative Care (PnPC) development projects in the literature and summarize the shared key principles. PnPC is a new concept in neonatal intensive care approach. Advancements in perinatal diagnostics and medical technology have changed the landscape of the perinatal world. The threshold of viability continues to decrease, and diagnostic information is available earlier in pregnancy and more rapidly at the bedside; overall outcomes continue to improve. This rapid technological improvement brings ethical debates on the quality of life of patients with life-limiting and life-threatening conditions and the need to involve the family in the decision-making process, according to their wishes and cultural beliefs. Although the Perinatal Hospice concept was developed in the 1980s in the US, the first recommendations on how to develop a PnPC pathway were published in the early 2000s. We considered the most relevant position statements or guidelines on PnPC published in the last two decades. Some of them were more pertinent to pediatrics but still useful for the fundamental concepts and PnPC project's development. Health care providers and institutions are encouraged to develop PnPC programs, which have the goal of maximizing the quality of life of infants with non-curable conditions. These may generally include the following: a formal prenatal consultation; development of a coordinated birth plan between obstetrician, newborn care, and family; access to other neonatal and pediatric specialties, as needed; comfort palliative care during the prenatal, birth, and postnatal periods; and psychosocial and spiritual support for families, siblings, and staff.
本研究的目的是评估文献中最重要的围产期姑息治疗(PnPC)发展项目,并总结共同的关键原则。PnPC是新生儿重症监护方法中的一个新概念。围产期诊断和医疗技术的进步改变了围产期领域的面貌。存活阈值持续降低,妊娠早期即可获得诊断信息,且床边诊断更快;总体预后持续改善。这种快速的技术进步引发了关于患有危及生命和限制生命疾病患者生活质量的伦理辩论,以及根据患者意愿和文化信仰让其家人参与决策过程的必要性。尽管围产期临终关怀概念于20世纪80年代在美国提出,但关于如何制定PnPC路径的首批建议直到21世纪初才发表。我们考虑了过去二十年中发表的关于PnPC最相关的立场声明或指南。其中一些与儿科更为相关,但对基本概念和PnPC项目的发展仍有帮助。鼓励医疗保健提供者和机构制定PnPC项目,其目标是使患有无法治愈疾病的婴儿的生活质量最大化。这些项目通常可能包括以下内容:正式的产前咨询;产科医生、新生儿护理人员和家庭之间制定协调一致的分娩计划;根据需要获得其他新生儿和儿科专科服务;产前、分娩和产后期间的舒适姑息治疗;以及为家庭、兄弟姐妹和工作人员提供心理社会和精神支持。