Linder E, Burguet A, Nobili F, Vieux R
Neonatal Department, Centre Hospitalier Universitaire de Strasbourg, 1, place de l'hôpital BP 426, 67091 Strasbourg cedex, France.
Department of Neonatology, Centre Hospitalier Universitaire de Dijon, 1, rue Paul-Gaffarel, 21079 Dijon, France.
Arch Pediatr. 2018 Aug;25(6):371-377. doi: 10.1016/j.arcped.2018.06.002. Epub 2018 Aug 22.
Technological advances in fetal and neonatal medicine, recent changes in the French legal framework, and encouraging results of the long-term outcomes in children with neonatal renal failure provide elements for an ethical reflection.
We led a nationwide enquiry among French pediatric nephrologists, intensivists, and neonatologists, exploring the decision-making process when contemplating starting renal replacement therapy (RRT) or delivering palliative care to neonates or infants with pre-end-stage or end-stage renal disease; and the ethical quandaries at hand in such scenarios.
A total of 134 responses with complete national coverage were obtained. Care to be delivered to an infant in pre-end-stage or end-stage renal disease did not achieve consensus. Pediatric nephrologists were more prone to initiate a dialysis/graft program than pediatric intensivists. When chronic kidney disease was associated with comorbidities, especially neurological impairment, physicians, regardless of their subspecialty, were more reluctant to initiate conservative treatment. Many of the doctors surveyed did not give their opinion in these prenatal and/or postnatal situations, considered to be unique and warranting a multidisciplinary reflection.
Such ethical dilemmas are challenging for parents and physicians. They can only be overcome by taking into account both concrete on the ground realities and general principles and values acknowledged to be a basis for respecting the individual. In this way, it ensures humaneness and humanization of a practice that must meet a variety of challenges, one by one. The answer is not simple; it is always unique to each child and can only be approached by a multidisciplinary, time-consuming, open discussion, which will never totally erase uncertainty.
胎儿及新生儿医学的技术进步、法国法律框架的近期变化以及新生儿肾衰竭患儿长期预后的鼓舞人心的结果为伦理思考提供了要素。
我们在法国儿科肾病学家、重症监护医生和新生儿科医生中进行了一项全国性调查，探讨在考虑对患有终末期前或终末期肾病的新生儿或婴儿开始肾脏替代治疗（RRT）或提供姑息治疗时的决策过程；以及此类情况下存在的伦理困境。
共获得134份覆盖全国的完整回复。对于为患有终末期前或终末期肾病的婴儿提供何种治疗并未达成共识。儿科肾病学家比儿科重症监护医生更倾向于启动透析/移植项目。当慢性肾病伴有合并症，尤其是神经功能损害时，无论其专业领域如何，医生都更不愿意开始保守治疗。许多接受调查的医生在这些产前和/或产后情况下未发表意见，认为这些情况独特且需要多学科思考。
此类伦理困境对家长和医生来说都具有挑战性。只有兼顾实际的具体情况以及公认的作为尊重个体基础的一般原则和价值观，才能克服这些困境。这样一来，就能确保一种必须逐一应对各种挑战的医疗行为具有人道性和人性化。答案并不简单；每个孩子的情况总是独特的，只能通过多学科、耗时且开放的讨论来处理，而这种讨论永远无法完全消除不确定性。
