Tejedor Torres J C, López de Heredia Goya J, Herranz Rubia N, Nicolás Jimenez P, García Munóz F, Pérez Rodríguez J
Unidad Neonatal, Hospital de Móstoles, Madrid, España.
An Pediatr (Barc). 2013 Mar;78(3):190.e1-190.e14. doi: 10.1016/j.anpedi.2012.07.012. Epub 2012 Sep 28.
Healthcare-professionals who work in neonatal units believe that a very important part of their work is the care of sick newborns, and their families if the neonate has an incurable disease or will die. The effort is focused on preventing disproportionate and unnecessary treatments that result in pain and discomfort, and also separate the child from his family. These situations usually occur when the infant has a terminal illness, extreme immaturity with complications, or severe birth defects. In this paper, the Ethics Working Group of the Spanish Society of Neonatology reflects on decision making at this time of life. The ethical aspects are reviewed, including, limiting treatment, the basis of decision-making process (that should include adequate information), the relationship of trust, and deliberation between parents and professionals to make the right decision. It highlights the importance of caring for the family in a complex situation and of great suffering, when faced with the recommendation of professionals to limit treatment because their child suffers from a disease with a poor prognosis. The care of the sick neonate care at the end of life, and their families requires a considerable effort, dedication and training of all health personnel. The repeated experience of being close to suffering and death can adversely affect the professionals involved. Finally, there is mention of the legal aspects of limiting treatment, how to perform and document decision process, the withdrawal of life support, assessment of symptoms and pain control and sedation.
在新生儿病房工作的医护人员认为，他们工作中非常重要的一部分是照顾患病的新生儿，以及在新生儿患有不治之症或即将死亡时照顾其家人。工作重点是防止导致疼痛和不适的过度和不必要的治疗，这些治疗还会使孩子与家人分离。这些情况通常发生在婴儿患有绝症、极度不成熟并伴有并发症或严重出生缺陷时。在本文中，西班牙新生儿学会伦理工作组思考了这个生命阶段的决策问题。回顾了伦理方面的问题，包括限制治疗、决策过程的基础（应包括充分的信息）、信任关系以及父母与专业人员之间为做出正确决策而进行的审议。它强调了在面对专业人员因孩子患有预后不良的疾病而建议限制治疗的复杂且痛苦的情况下，照顾家庭的重要性。对临终患病新生儿及其家人的护理需要所有医护人员付出巨大努力、奉献精神和进行培训。近距离接触痛苦和死亡的反复经历可能会对相关专业人员产生不利影响。最后，提到了限制治疗的法律方面、如何执行和记录决策过程、撤除生命支持、症状评估以及疼痛控制和镇静。
