University of Michigan Division of Neonatal-Perinatal Medicine, Department of Pediatrics, Ann Arbor, MI, USA; Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, MI, USA.
Division of Neonatology, Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, MD, USA; Johns Hopkins Berman Institute of Bioethics, Baltimore, MD, USA.
Semin Fetal Neonatal Med. 2018 Feb;23(1):17-24. doi: 10.1016/j.siny.2017.09.003. Epub 2017 Sep 13.
Despite advances in life-saving technology for critically ill neonates, challenges continue to arise for infants delivered with extreme prematurity, congenital anomalies, and genetic conditions that exceed the limits of currently available interventions. In these situations, parents are forced to make cognitively and emotionally difficult decisions, in discussion with a neonatologist, regarding how aggressively to provide supportive measures at the time of delivery and at what point burdens of therapy outweigh benefits. Current guidelines recommend that parents' values should guide these decisions; however, little is known about the values parents hold, and how those values are employed in the context of complexity, uncertainty, and emotionality of these situations. Systematic investigation of how parents derive their values and how clinicians should engage with parents about those values is necessary to guide the development of interventions to enhance shared decision-making processes, ultimately improving satisfaction, coping, and resilience and minimizing the potential for regret.
尽管在拯救危重新生儿的生命方面取得了进步，但对于出生时患有极度早产、先天性异常和遗传疾病的婴儿，仍然存在挑战，这些疾病超出了现有干预措施的范围。在这些情况下，父母不得不与新生儿科医生进行认知和情感上的艰难讨论，决定在分娩时以及治疗的负担超过益处时，应该积极提供支持措施的程度。目前的指南建议，父母的价值观应该指导这些决策；然而，人们对父母所持有的价值观知之甚少，也不知道在这些复杂、不确定和情绪化的情况下，这些价值观是如何被运用的。系统地研究父母如何形成自己的价值观，以及临床医生应该如何与父母讨论这些价值观，对于指导干预措施的发展以增强共同决策过程是必要的，最终可以提高满意度、应对能力和适应力，并最大限度地减少后悔的可能性。
