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让关系自然发展:探讨复发/难治性癌症死亡儿童在初始和后续姑息治疗访视中讨论的原因和话题。

Allowing Relationships to Unfold: Consult Reason and Topics Discussed in Initial and Subsequent Palliative Care Visits Among Children Who Died From Relapsed/Refractory Cancer.

机构信息

School of Nursing, Vanderbilt University, Nashville, TN, USA.

Division of Hematology/Oncology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.

出版信息

J Pediatr Hematol Oncol Nurs. 2023 May-Jun;40(3):170-177. doi: 10.1177/27527530221140069. Epub 2023 Feb 1.

Abstract

Children with relapsed/refractory cancer have a myriad of palliative care needs. While pediatric oncology clinicians meet many of these needs, studies suggest that these children often have distressing symptoms and that families feel unprepared for their child's end-of-life (EOL). Oncology clinicians cite barriers to pediatric palliative care (PPC) consultation, including concerns that PPC teams will upset families with EOL discussions. This study evaluated topics addressed by PPC teams over the course of their relationship with children who died from cancer. Retrospective chart review of children who were diagnosed with relapsed/refractory cancer, received PPC consultation at an academic children's hospital, and died between January 2008 and January 2017. Information was extracted regarding the child's treatment, EOL care, and the content of PPC consultation over the course of the team's relationship with the child/family. Fifty-six children were included in the analysis. The most frequent reasons for the initial consult were pain ( = 31, 55%) and non-pain symptom management ( = 18, 32%). At the initial consult, the PPC team most often discussed symptom management and psychosocial support. Prognosis was not discussed in any initial consult. Over subsequent visits, the PPC team expanded their scope of discussion to include goals of care, advance care planning, and hospice. Concerns from oncology clinicians that PPC teams will extend beyond the reasons for initial consult into prognostic/EOL discussions at the first visit may be unfounded. Greater familiarity with PPC team practices may facilitate more timely consultation of PPC and its complementary set of services.

摘要

患有复发/难治性癌症的儿童有许多姑息治疗需求。儿科肿瘤临床医生满足了这些需求中的许多需求,但研究表明,这些儿童经常有痛苦的症状,并且家庭对孩子的临终关怀感到准备不足。肿瘤临床医生列举了儿科姑息治疗 (PPC) 咨询的障碍,包括担心 PPC 团队会因临终讨论而使家庭不安。这项研究评估了 PPC 团队在与死于癌症的儿童建立关系的过程中所涉及的主题。

对 2008 年 1 月至 2017 年 1 月期间在学术儿童医院被诊断出患有复发/难治性癌症、接受 PPC 咨询并死亡的儿童进行回顾性图表审查。提取了有关儿童治疗、临终关怀和 PPC 咨询内容的信息,这些信息是在团队与儿童/家庭关系的过程中获得的。

共有 56 名儿童被纳入分析。最初咨询的最常见原因是疼痛( = 31,55%)和非疼痛症状管理( = 18,32%)。在最初的咨询中,PPC 团队最常讨论症状管理和心理社会支持。在任何最初的咨询中都没有讨论预后。在随后的就诊中,PPC 团队扩大了讨论范围,包括护理目标、预先护理计划和临终关怀。

肿瘤临床医生的担忧是,PPC 团队将超出最初咨询的原因,在第一次就诊时就将讨论范围扩大到预后/临终问题,这可能是没有根据的。对 PPC 团队实践的更多了解可能会促进更及时地咨询 PPC 及其互补服务。

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