Department of Pediatrics (K.W.M.), Division of Newborn Medicine,Washington University in St. Louis School of Medicine, St. Louis, Missouri, USA.
Department of Pediatrics (A.S.), Section of Palliative Medicine, University of Colorado School of Medicine, Aurora, Colorado, USA.
J Pain Symptom Manage. 2024 Oct;68(4):410-420. doi: 10.1016/j.jpainsymman.2024.07.009. Epub 2024 Jul 18.
Children from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences.
We examine the characteristics of deceased children with a focus on race, ethnicity, and preferred language.
We conducted a cross-sectional study of patients who died at Texas Children's Hospital from 2018 to 2019. Demographics, date of death, and final code status were extracted. Medical complexity prior to admission and mode of death were obtained from chart review.
We included 433 patients. Over one-third were Hispanic (39.3%) with 42.3% preferring Spanish. The majority were White (61.4%) or Black (21.0%). Most patients had significant medical complexity (52.0%) or were infants in their birth admission (29.4%). Half (52.4%) received palliative care; patients with increased medical complexity were more likely to have palliative care involved (P<0.001). There were no differences in palliative care, code status, or mode of death by race. Hispanic patients were less likely to have a full code status (OR 0.42, 95% CI: 0.25-0.73). Spanish-speaking patients were more likely to have palliative care involvement (OR 2.05, 95% CI: 1.21-3.46) and less likely full code orders (OR 0.24, 95% CI: 0.1-0.63).
Palliative care services are engaged with most children at end of life and is accessible to marginalized patient groups. Spanish-speaking patients have different code status orders and modes of death at end of life. Further studies are needed to elucidate explanatory factors for differences revealed and multicenter studies are needed to characterize more widespread experiences.
处于社会边缘群体的儿童面临更糟糕的医疗结局，但人们对他们的临终体验知之甚少。
我们研究了已故儿童的特征，重点关注种族、族裔和首选语言。
我们对 2018 年至 2019 年在德克萨斯儿童医院去世的患者进行了横断面研究。提取人口统计学、死亡日期和最终代码状态等数据。从病历中获取入院前的医疗复杂性和死亡方式。
我们纳入了 433 名患者。超过三分之一的患者为西班牙裔（39.3%），其中 42.3%的患者首选西班牙语。大多数患者为白人（61.4%）或黑人（21.0%）。大多数患者存在严重的医疗复杂性（52.0%）或在入院时为婴儿（29.4%）。有一半（52.4%）的患者接受了姑息治疗；医疗复杂性增加的患者更有可能接受姑息治疗（P<0.001）。种族与姑息治疗、代码状态或死亡方式均无差异。西班牙裔患者的完全复苏意愿更低（OR 0.42，95%CI：0.25-0.73）。讲西班牙语的患者更有可能接受姑息治疗（OR 2.05，95%CI：1.21-3.46），而完全复苏意愿更低（OR 0.24，95%CI：0.1-0.63）。
临终关怀服务与大多数儿童有关，且对边缘患者群体是可及的。讲西班牙语的患者在临终时有不同的代码状态和死亡方式。需要进一步的研究来阐明所揭示的差异的解释因素，并需要多中心研究来描述更广泛的经验。
