Kaempf Joseph W, Dirksen Kevin
Providence St. Vincent Medical Center, Women and Children's Services, Providence Center for Health Care Ethics, Portland, OR, USA.
J Perinatol. 2018 Apr;38(4):306-310. doi: 10.1038/s41372-017-0024-4. Epub 2017 Dec 15.
Most extremely premature infants die in the intensive care unit or suffer significant neurologic impairment. Many therapies result in unhealthy consequences, and the emotional and financial turmoil for families warrant reappraisal of our motives. Shared decision-making and informed consent in preference-sensitive conditions imply the family: (a) understands the medical problem, (b) grasps the risks and benefits of each therapy, (c) has the opportunity to ask questions and reflect upon options, (d) knows their values and preferences are understood, and (e) accepts or declines therapies without judgment or penalty. Mandatory resuscitation of premature infants or inflexible palliative comfort care policies are inconsistent with the principles of informed consent and shared decision-making. Physicians should emulate the Greek ideal of sophrosyne-virtue inherent to balance, reasoned limits, freedom but restraint, and humility. Informed choice is fundamental to liberty; evidence-based periviability guidelines and decision aids bolstered by structured informed consent ensure process integrity.
大多数极早产儿死于重症监护病房或遭受严重的神经损伤。许多治疗会带来不良后果，而家庭所面临的情感和经济动荡值得我们重新审视自身动机。在偏好敏感的情况下，共同决策和知情同意意味着家庭要：(a) 理解医疗问题，(b) 掌握每种治疗的风险和益处，(c) 有机会提问并思考各种选择，(d) 知道其价值观和偏好被理解，以及 (e) 接受或拒绝治疗时不会受到评判或惩罚。对早产儿进行强制复苏或采取僵化的姑息性舒适护理政策与知情同意和共同决策的原则不符。医生应效仿希腊人关于节制的理想——平衡、合理限制、自由但有约束以及谦逊所固有的美德。知情选择是自由的基础；基于证据的可存活界限指南和由结构化知情同意支持的决策辅助工具可确保过程的完整性。
