Mack Jennifer W, Wolfe Joanne
Departments of Pediatric Oncology and the Center for Outcomes and Policy Research, Dana-Farber Cancer Institute and the Department of Medicine, Children's Hospital, Boston, Massachusetts 02115, USA.
Curr Opin Pediatr. 2006 Feb;18(1):10-4. doi: 10.1097/01.mop.0000193266.86129.47.
Pediatric palliative care, with its emphasis on symptom management and quality of life, is an important aspect of care of children with life-threatening illnesses. We review recent publications with implications for care of these children.
Invasive and life-sustaining measures continue to be part of care for many children with life-threatening illnesses, even at the end of life. While these measures may seem reasonable when recovery is possible, they may not fit with a family's preferences for end-of-life care. One possible cause of the prevalence of invasive measures in children at the end of life is that complex illness trajectories in children make it difficult to predict the timing of death. Inadequate communication by clinicians can also lead to poor preparation for the end-of-life period. Early integration of palliative care allows for improved symptom management, parental adjustment, and preparation for the end-of-life care period. Families who have the opportunity to prepare for the end-of-life period, including learning what to expect, are more likely to feel that their care has been of high quality. Bereaved parents also recognize the value of talking about death with their children.
Early integration of palliative care can allow children and families to make decisions about care that fit with their values, and should become a standard of care for all children with life-threatening illnesses.
儿童姑息治疗强调症状管理和生活质量，是危及生命疾病患儿护理的重要方面。我们回顾近期对这些患儿护理有影响的出版物。
侵入性和维持生命的措施仍是许多危及生命疾病患儿护理的一部分，甚至在生命末期也是如此。虽然在有可能康复时这些措施似乎合理，但可能不符合家庭对临终护理的偏好。儿童临终时侵入性措施普遍存在的一个可能原因是，儿童复杂的疾病轨迹使得难以预测死亡时间。临床医生沟通不足也会导致临终期准备不足。早期整合姑息治疗可改善症状管理、家长适应情况以及临终护理期准备。有机会为临终期做准备（包括了解预期情况）的家庭更有可能觉得他们得到了高质量的护理。失去亲人的父母也认识到与孩子谈论死亡的价值。
早期整合姑息治疗可让儿童和家庭做出符合其价值观的护理决策，应成为所有危及生命疾病患儿的护理标准。
