儿童安宁疗护营养管理专家建议

Expert recommendations on nutritional management in pediatric end-of-life care

患儿在生命终末期会因为原发疾病进展和症状负担造成营养状态恶化和生活质量的下降,因此营养管理也是儿童安宁疗护的重要组成部分。为了帮助临床工作者为生命终末期儿童提供更适宜的营养管理,经过文献回顾和专家讨论,针对生命终末期儿童营养评估、营养管理计划制定和具体实施提出专家建议。本建议强调营养管理计划需基于对患儿风险和益处的权衡,以患儿的舒适和利益至上,制定过程中需安宁疗护多学科团队成员之间、以及与患儿和家长的反复沟通确定个体化方案,并在实施过程中反复评估和调整。

The progress of the primary condition and symptom burden led to nutrition deterioration and a further decrease in quality of life in children at end-of-life.Thus,nutritional management plays an important role in pediatric hospice care.To help clinical staff to provide appropriate nutritional management for children at end-of-life,recommendations on nutritional assessment,decision-making,and detailed implementation in nutritional management for children at end-of-life have been developed through reviewing current literature and expert discussion.The recommendations emphasize that individualized nutritional management protocol should be based on considerations of the balance of risks and benefits.The nutritional management plan should be child-interest-centered and seek to maximize the child′s comfort.Developing individualized protocols requires communication between members of the hospice multi-disciplinary team,the child,and the family.Reevaluation,monitoring,and dynamic adjustment of the protocol during implementation are needed.