Fleischman A R, Nolan K, Dubler N N, Epstein M F, Gerben M A, Jellinek M S, Litt I F, Miles M S, Oppenheimer S, Shaw A
Department of Pediatrics, Albert Einstein College of Medicine & Montefiore Medical Center, Bronx, NY.
Pediatrics. 1994 Oct;94(4 Pt 1):433-9.
Much has been written about the care of the hopelessly ill adult, but there is little guidance for pediatric health care professionals in the management of children who are critically or terminally ill.
Through a 3-day meeting in Tarrytown, NY, attended by a group of pediatricians and others directly involved in these issues, a principled approach was developed for the treatment of, and health care decision-making for, children who are gravely ill.
The group agreed that the needs and interests of the child must be the central focus of any treatment plan and that the child should be involved to as great extent possible, consistent with developmental maturity, in the decision-making process. Quality of future life should be viewed as being relevant in all decisions. Parents are believed to be the natural guardians of children and ought to have great latitude in making decisions for them. However, parental discretion is not absolute and professionals must maintain an independent obligation to protect the child's interests.
Decision-making should be collaborative among patient, parents, and professionals. When conflict arises, consultation and ethics committees may assist in resolution. When cure or restoration of function is no longer possible, or reasonable, promotion of comfort becomes the primary goal of management. Optimal use of pain medication and compassionate concern for the physical, psychological, and spiritual well-being of the child and family should be the primary focus of the professionals caring for the dying child.
关于对无可救药的成年患者的护理已有诸多著述，但对于儿科医疗保健专业人员在治疗重症或绝症儿童方面，却几乎没有指导意见。
通过在纽约塔里敦举行为期三天的会议，一群儿科医生及其他直接涉及这些问题的人员共同制定了一种针对重症儿童治疗及医疗保健决策的原则性方法。
该小组一致认为，儿童的需求和利益必须是任何治疗计划的核心重点，并且在符合发育成熟度的情况下，儿童应尽可能参与决策过程。在所有决策中都应考虑未来生活质量。父母被视为儿童的自然监护人，在为其做出决策时应有很大的自由裁量权。然而，父母的决定权并非绝对，专业人员必须承担保护儿童利益的独立义务。
决策应在患者、父母和专业人员之间协作进行。当出现冲突时，咨询和伦理委员会可协助解决。当治愈或恢复功能不再可行或不合理时，促进舒适成为管理的主要目标。最佳使用止痛药物以及对儿童及其家庭的身体、心理和精神福祉给予同情关怀，应成为照顾濒死儿童的专业人员的主要关注点。
