Korzeniewska-Eksterowicz Aleksandra, Przysło Łukasz, Moczulska Hanna
Pediatric Palliative Care Unit, Department of Pediatrics, Oncology and Hematology, Medical University of Lodz, 36/50 Sporna Str, 91-738, Lodz, Poland.
Gajusz Foundation - Pediatric Palliative Care Center, Lodz, Poland.
Eur J Pediatr. 2025 Jun 9;184(7):404. doi: 10.1007/s00431-025-06210-9.
From September 2014 to April 2016, the project "Let me be" was carried out by Gajusz Foundation. We aimed to inform clinical practice by describing a model of perinatal palliative care and to determine who is referred for care, what happens after referral and delivery, pregnancy outcomes, and referral rates.
A retrospective analysis of the medical records of 72 families who qualified for perinatal palliative care; data on other project activities were also presented.
The most important project outcome was the development of a perinatal palliative care model in which perinatal hospice functioned outside the hospital structure. During the project, 20 training sessions for 126 healthcare workers were organized, guidebooks were prepared for the medical staff and parents, and 2 films were produced. Seventy-two women were enrolled in the perinatal palliative care program. Approximately 4.9-24.2% of eligible families entered the perinatal palliative care program. Trisomies 18,13,21 were diagnosed in 33% of the cases; 47 live births and 21 stillbirths were observed. Four families decided to terminate the pregnancy; 26 children died on the first day of life, and 10 died within the first week of life.
Parents who were referred for perinatal palliative care received multidisciplinary support. We observed an increase in the percentage of referrals over 7 years, but the incomplete application of the program remains problematic. Systemic changes in postgraduate training and subsequent legislative changes should also be considered. Our research confirms the characteristics of diagnosis, referrals, and outcomes observed in other studies.
• The perinatal palliative care (PPC) programs may be comprehensive, initiated early, and integrative. • Most publications talk about hospital based care.
• In our model, the perinatal hospice functioning outside the hospital structure takes over the role of the care coordinator and offers a multidisciplinary support for parents. • Due to the insufficient application to the PPC program the systemic changes in the training of obstetricians and legislative changes which would oblige the physician diagnosing a lethal abnormality to inform and refer the woman to PPC should be considered.
2014年9月至2016年4月，加尤什基金会开展了“成为我自己”项目。我们旨在通过描述围产期姑息治疗模式为临床实践提供信息，并确定接受护理的对象、转诊后及分娩后的情况、妊娠结局和转诊率。
对72个符合围产期姑息治疗条件的家庭的病历进行回顾性分析；还展示了其他项目活动的数据。
该项目最重要的成果是建立了一种围产期姑息治疗模式，其中围产期临终关怀在医院结构之外发挥作用。项目期间，为126名医护人员组织了20次培训课程，为医护人员和家长编写了指导手册，并制作了2部影片。72名妇女参加了围产期姑息治疗项目。约4.9%-24.2%的符合条件的家庭进入了围产期姑息治疗项目。18、13、21三体综合征在33%的病例中被诊断出；观察到47例活产和21例死产。4个家庭决定终止妊娠；26名儿童在出生第一天死亡，10名在出生第一周内死亡。
接受围产期姑息治疗转诊的父母获得了多学科支持。我们观察到7年中转诊率有所上升，但该项目的不完全应用仍然存在问题。还应考虑研究生培训的系统性变化以及随后的立法变化。我们的研究证实了其他研究中观察到的诊断、转诊和结局的特征。
•围产期姑息治疗（PPC）项目可能是全面的、早期启动的和综合性的。•大多数出版物讨论的是基于医院的护理。
•在我们的模式中，在医院结构之外发挥作用的围产期临终关怀承担了护理协调员的角色，并为父母提供多学科支持。•由于PPC项目的应用不足，应考虑产科医生培训的系统性变化以及立法变化，这些变化将迫使诊断出致命异常的医生告知并将该妇女转诊至PPC。
