Harper Joann, Hinds Pamela S, Baker Justin N, Hicks Judy, Spunt Sheri L, Razzouk Bassem I
Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee 38105-2794, USA.
J Pediatr Oncol Nurs. 2007 Sep-Oct;24(5):246-54. doi: 10.1177/1043454207303882.
Children living with and dying of advanced-stage cancer suffer physically, emotionally, and spiritually. Relief of their suffering requires comprehensive, compassionate palliative and end-of-life (EoL) care.However, an EoL care program might appear inconsistent with the mission of a pediatric oncology research center committed to seeking cures. Here the authors describe the methods used to achieve full institutional commitment to their EoL care program and those used to build the program's philosophical, research, and educational foundations after they received approval. The authors convened 10 focus groups to solicit staff perceptions of the hospital's current palliative and EoL care. They also completed baseline medical record reviews of 145 patient records to identify key EoL characteristics. The authors then crafted a vision statement and a strategic plan, implemented new research protocols,and established publication and funding trajectories. They conclude that establishing a state-of-the-art palliative and EoL program in a cure-oriented pediatric setting is achievable via consensus building and recruitment of diverse institutional resources.
患有晚期癌症并濒临死亡的儿童在身体、情感和精神上都承受着痛苦。减轻他们的痛苦需要全面、富有同情心的姑息治疗和临终关怀。然而，临终关怀项目可能看似与致力于寻求治愈方法的儿科肿瘤研究中心的使命不一致。在此，作者描述了为使机构全面致力于其临终关怀项目所采用的方法，以及在获得批准后用于构建该项目的哲学、研究和教育基础的方法。作者召集了10个焦点小组，以征求工作人员对医院当前姑息治疗和临终关怀的看法。他们还完成了对145份患者病历的基线审查，以确定关键的临终特征。作者随后制定了愿景声明和战略计划，实施了新的研究方案，并确定了出版和资金投入方向。他们得出结论，通过建立共识和调动各种机构资源，在以治愈为导向的儿科环境中建立一个先进的姑息治疗和临终关怀项目是可行的。
