Jacobs Shana, Perez Jennie, Cheng Yao Iris, Sill Anne, Wang Jichuan, Lyon Maureen E
Children's National Medical Center/Division of Oncology/Children's Research Institute/Center for Cancer and Immunology Research and George Washington University School of Medicine and Health Sciences, Washington, District of Columbia.
Pediatr Blood Cancer. 2015 Apr;62(4):710-4. doi: 10.1002/pbc.25358. Epub 2014 Dec 24.
Little is known about how well family members accurately represent adolescents when making EOL decisions on their behalf. This study reports on surveys given to adolescents with cancer and their parents as part of a larger study facilitating advanced care discussions, as well as the results of a survey for health care providers.
Trained facilitators administered surveys orally to adolescents and families in the intervention arm of the FAmily CEntered Advance Care Planning (ACP) for Teens with Cancer (FACE-TC) study. In addition, a post-hoc survey was sent to oncology providers.
Seventeen adolescent/family dyads completed this survey. Seventy five percent of adolescents believed it was appropriate to discuss EOL decisions early and only 12% were not comfortable discussing death. Most preferred to be at home if dying. There were substantial areas of congruence between adolescents and their surrogates, but lower agreement on the importance of dying a natural death, dying at home and "wanting to know if I were dying." Among providers, 83% felt their patients' participation in the study was helpful to the patients and 78% felt it was helpful to them as providers.
Adolescents with cancer were comfortable discussing EOL, and the majority preferred to talk about EOL issues before they are facing EOL. There were substantive areas of agreement between adolescents and their surrogates, but important facets of adolescents' EOL wishes were not known by their families, reinforcing the importance of eliciting individual preferences and engaging dyads so parents can understand their children's wishes.
在代表青少年做出临终决定时，家庭成员对青少年情况的准确反映程度鲜为人知。本研究报告了作为一项促进晚期护理讨论的大型研究的一部分，对患有癌症的青少年及其父母进行的调查，以及对医疗保健提供者的调查结果。
经过培训的协调员在针对患有癌症青少年的家庭中心晚期护理规划（FACE-TC）研究的干预组中，向青少年及其家庭口头进行调查。此外，还向肿瘤学提供者发送了一项事后调查。
17对青少年/家庭二元组完成了这项调查。75%的青少年认为尽早讨论临终决定是合适的，只有12%的青少年对讨论死亡感到不舒服。大多数人希望如果临终时能在家中。青少年与其代理人之间存在大量一致的领域，但在自然死亡、在家中死亡以及“想知道自己是否临终”的重要性方面，意见一致性较低。在提供者中，83%的人认为他们的患者参与研究对患者有帮助，78%的人认为对他们作为提供者有帮助。
患有癌症的青少年对讨论临终问题感到自在，并且大多数人希望在面临临终之前谈论临终问题。青少年与其代理人之间存在实质性的一致领域，但青少年临终愿望的重要方面其家人并不知晓，这强化了引出个人偏好并让二元组参与的重要性，以便父母能够理解孩子的愿望。
