Center for Pediatric Palliative Care, Dr. von Hauner Children's Hospital, University Hospital, LMU Munich, Marchioninistraße 15, Munich, 81377, Germany.
Pediatric Palliative Care, Department of Pediatrics, Bern University Hospital, Bern, Switzerland.
Eur J Pediatr. 2023 Apr;182(4):1847-1855. doi: 10.1007/s00431-023-04813-8. Epub 2023 Feb 16.
Only a few acute hospital inpatient units dedicated to pediatric palliative care (PPC) patients exist today. Clinical data on the patients and care provided at specialized acute PPC inpatient units (PPCUs) are scarce. This study aims at describing patient and care characteristics on our PPCU to learn about the complexity and relevance of inpatient PPC. A retrospective chart analysis was performed on the 8-bed PPCU of the Center for Pediatric Palliative Care of the Munich University Hospital, including demographic, clinical, and treatment characteristics (487 consecutive cases; 201 individual patients; 2016-2020). Data were analyzed descriptively; the chi-square test was used for comparisons. Patients' age (1-35.5 years, median: 4.8 years) and length of stay (1-186 days, median 11 days) varied widely. Thirty-eight percent of patients were admitted repeatedly (range 2-20 times). Most patients suffered from neurological diseases (38%) or congenital abnormalities (34%); oncological diseases were rare (7%). Patients' predominant acute symptoms were dyspnea (61%), pain (54%), and gastrointestinal symptoms (46%). Twenty percent of patients suffered from > 6 acute symptoms, 30% had respiratory support incl. invasive ventilation, 71% had a feeding tube, and 40% had full resuscitation code. In 78% of cases, patients were discharged home; 11% died on the unit.
This study shows the heterogeneity, high symptom burden, and medical complexity of the patients on the PPCU. The high dependency on life-sustaining medical technology points to the parallelism of life-prolonging and palliative treatments that is typical for PPC. Specialized PPCUs need to offer care at the intermediate care level in order to respond to the needs of patients and families.
• Pediatric patients in outpatient PPC or hospices present with a variety of clinical syndromes and different levels of complexity and care intensity. • There are many children with life-limiting conditions (LLC) in hospitals, but specialized PPC hospital units for these patients are rare and poorly described.
• Patients on a specialized PPC hospital unit show a high symptom burden and a high level of medical complexity, including dependency on medical technology and frequent full resuscitation code. • The PPC unit is mainly a place for pain and symptom management as well as crisis intervention, and needs to be able to offer treatment at the intermediate care level.
描述我们的儿科姑息治疗（PPC）急性住院病房患者和护理的特点，以了解住院 PPC 的复杂性和重要性。
回顾性分析慕尼黑大学医院儿科姑息治疗中心 8 张床位的 PPCU 的图表，包括人口统计学、临床和治疗特征（487 例连续病例；201 名个体患者；2016-2020 年）。数据采用描述性分析；卡方检验用于比较。
患者年龄（1-35.5 岁，中位数：4.8 岁）和住院时间（1-186 天，中位数 11 天）差异很大。38%的患者反复入院（范围 2-20 次）。大多数患者患有神经疾病（38%）或先天性异常（34%）；肿瘤疾病很少见（7%）。患者主要的急性症状是呼吸困难（61%）、疼痛（54%）和胃肠道症状（46%）。20%的患者有 > 6 种急性症状，30%有呼吸支持包括有创通气，71%有喂养管，40%有全面复苏代码。78%的患者出院回家；11%的患者在病房死亡。
本研究表明，PPCU 患者的异质性、高症状负担和医疗复杂性。对维持生命的医疗技术的高度依赖表明，延长生命和姑息治疗的并行性是 PPC 的典型特征。专门的 PPCU 需要提供中级护理水平的护理，以满足患者和家庭的需求。
儿科 PPC 门诊或临终关怀患者表现出多种临床综合征，复杂性和护理强度也不同。医院里有很多患有生命有限疾病（LLC）的儿童，但专门的 PPC 医院病房很少，也描述得不好。
专门的 PPC 医院病房的患者表现出高症状负担和高医疗复杂性，包括对医疗技术的依赖和频繁的全面复苏代码。该单位主要是疼痛和症状管理以及危机干预的场所，需要能够提供中级护理水平的治疗。
