Institute for Cancer Outcomes and Survivorship, Heersink School of Medicine, University of Alabama at Birmingham, Birmingham, Alabama, USA.
School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA.
Cancer. 2024 Dec 15;130(24):4315-4333. doi: 10.1002/cncr.35518. Epub 2024 Aug 18.
The authors sought to understand bereaved family preferences for end-of-life (EOL) care, particularly among Black families and those in the South.
Semi-structured interviews were conducted with parents of children who died of cancer ≥6 months before at Children's of Alabama. Themes were identified via content analysis. Quotes related to medical intensity, chemotherapy, and location of death (LOD) were scored on 5-point Likert scales, ranging from 1 (comfort care, chemotherapy, or home death) to 5 (medically intense care, avoidance of chemotherapy, or hospital death).
Twenty-seven bereaved parents (12 Black) were interviewed. Children died at a mean of 13.1 years (SD = 6.1 years) and a median of 3 years before the interview (range = 1-12 years). Ten children (42%) had central nervous system tumors and the majority (63%) died in the hospital. Family decision-making involved maintaining hope, not causing harm, doing what was best for their child and themselves, and religious beliefs. There was no clear preference for home versus hospital death (3.0 [1.8-4.0]). Instead, parents considered their child's desires and/or medical needs, siblings, and prior experiences with death. To have a comfortable death, parents highlighted the need for comprehensive education about their child's EOL, a caring and comfortable environment, and 24/7 access to their care team. Families expressed a dual preference for comfort care (1.8 [1.3-2.8]) and chemotherapy (3.5 [2.7-4.1]) at EOL.
Families did not see chemotherapy and comfort care as conflicting goals. They sought quality care emphasizing flexibility, quality time with their child, and open access to their care team, regardless of LOD.
作者试图了解丧亲家庭对临终关怀的偏好，特别是在黑人和南方家庭中。
对在阿拉巴马儿童的癌症死亡≥6 个月的儿童的父母进行半结构化访谈。通过内容分析确定主题。与医疗强度、化疗和死亡地点（LOD）相关的引语按 5 分制 Likert 量表评分，范围从 1（舒适护理、化疗或在家死亡）到 5（医疗强度护理、避免化疗或医院死亡）。
对 27 名丧亲父母（12 名黑人）进行了访谈。儿童的平均死亡年龄为 13.1 岁（SD=6.1 岁），中位数为访谈前 3 年（范围=1-12 岁）。10 名儿童（42%）患有中枢神经系统肿瘤，大多数（63%）在医院死亡。家庭决策涉及保持希望、不造成伤害、为孩子和自己做最好的事情以及宗教信仰。在家中或医院死亡没有明显的偏好（3.0[1.8-4.0]）。相反，父母考虑孩子的愿望和/或医疗需求、兄弟姐妹以及之前的死亡经历。为了让孩子舒适地死亡，父母强调需要全面了解孩子的临终关怀、关怀和舒适的环境以及 24/7 随时获得护理团队的支持。家属对临终关怀时的舒适护理（1.8[1.3-2.8]）和化疗（3.5[2.7-4.1]）表达了双重偏好。
家属并不认为化疗和舒适护理是相互冲突的目标。他们寻求强调灵活性、与孩子共度美好时光以及随时获得护理团队支持的高质量护理，而不论 LOD 如何。
