Department of Paediatric Palliative Medicine, Maternal-Child of Malaga, Regional University Hospital. University of Málaga, Málaga, Spain.
University of Málaga. Malaga Biomedical Research Institute (IBIMA), Málaga, Spain.
Eur J Pediatr. 2023 May;182(5):2369-2377. doi: 10.1007/s00431-023-04870-z. Epub 2023 Mar 9.
Each year, more than 8 million children worldwide require specialized palliative care, yet there is little evidence available in pediatrics on the characteristics of the end of life in this context. Our aim is to analyze the characteristics of patients who die in the care of specific pediatric palliative care teams. This is ambispective, analytical observational, multicenter study conducted between 1 January and 31 December 2019. Fourteen specific pediatric palliative care teams participated. There are 164 patients, most of them suffering from oncologic, neurologic, and neuromuscular processes. The follow-up time was 2.4 months. The parents voiced preferences in respect of the place of death for 125 of the patients (76.2%). The place of death for 95 patients (57.9%) was at the hospital and 67 (40.9%) was at home. The existence of a palliative care team for over 5 years is more likely to be related to families voicing preferences and their fulfillment. Longer follow-up times by pediatric palliative care teams were observed in families with whom preferences regarding the place of death were discussed and in patients who died at home. Patients who did not receive home visits, when the pediatric palliative care team did not provide full care and when preferences regarding the place of death were not discussed with parents, were more likely to die in the hospital. Conclusions: Advance planning of end-of-life care is one of the most important aspects of pediatric palliative care. The provision of services by the teams and the follow-up time are related to parents' expressed preferences and the place of death. What is Known: • Various studies have shown how the availability of pediatric palliative care services improves the quality of life of patients and their families while reducing costs. • The place of death is an important factor influencing the quality of end-of-life care for dying people. The increase in palliative care teams increases the number of deaths in the home and having this care available 24/7 increases the probability of dying at home. What is New: • Our study identifies how a longer follow-up time of patients by palliative care teams is significantly associated with death at home and with express and comply with the preferences expressed by families. • Home visits by the palliative care team increase the likelihood that the patient will die at her home and that the preferences expressed by the palliative care team families will be cared for.
每年，全球有超过 800 万儿童需要专门的姑息治疗，但在儿科领域，关于这方面生命终末期的特征几乎没有可用的证据。我们的目的是分析在特定儿科姑息治疗团队护理下死亡的患者的特征。这是一项前瞻性、分析性、多中心研究，于 2019 年 1 月 1 日至 12 月 31 日进行。14 个特定的儿科姑息治疗团队参与了该研究。共有 164 名患者，其中大多数患有肿瘤、神经和神经肌肉疾病。随访时间为 2.4 个月。125 名患者（76.2%）的父母表达了对死亡地点的偏好。95 名患者（57.9%）的死亡地点在医院，67 名患者（40.9%）的死亡地点在医院。姑息治疗团队成立超过 5 年，更有可能与家庭表达的偏好及其实现相关。姑息治疗团队随访时间较长的家庭，以及在家中死亡的家庭，更有可能表达对死亡地点的偏好。没有接受家访的患者，当姑息治疗团队未能提供全面护理以及未与父母讨论死亡地点偏好时，更有可能在医院死亡。结论：预先规划生命终末期护理是儿科姑息治疗最重要的方面之一。团队提供的服务和随访时间与父母表达的偏好和死亡地点有关。已知内容：• 多项研究表明，提供儿科姑息治疗服务如何提高患者及其家庭的生活质量，同时降低成本。• 死亡地点是影响临终关怀质量的一个重要因素。姑息治疗团队的增加增加了在家中死亡的人数，并且 24/7 提供这种护理增加了在家中死亡的可能性。新内容：• 我们的研究确定了姑息治疗团队对患者的随访时间较长与在家中死亡以及表达和满足家庭表达的偏好显著相关。• 姑息治疗团队的家访增加了患者在家中死亡的可能性，并增加了姑息治疗团队家庭表达的偏好得到满足的可能性。
