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Valuing life and evaluating suffering in infants with life-limiting illness
Theoretical Medicine and Bioethics ( IF 1.1 ) Pub Date : 2020-12-17 , DOI: 10.1007/s11017-020-09532-x
Dominic Wilkinson 1, 2, 3 , Amir Zayegh 3, 4
Affiliation  

In this paper, we explore three separate questions that are relevant to assessing the prudential value of life in infants with severe life-limiting illness. First, what is the value or disvalue of a short life? Is it in the interests of a child to save her life if she will nevertheless die in infancy or very early childhood? Second, how does profound cognitive impairment affect the balance of positives and negatives in a child’s future life? Third, if the life of a child with life-limiting illness is prolonged, how much suffering will she experience and can any of it be alleviated? Is there a risk that negative experiences for such a child (suffering) will remain despite the provision of palliative care? We argue that both the subjective and objective components of well-being for children could be greatly reduced if they are anticipated to have a short life that is affected by profound cognitive impairment. This does not mean that their overall well-being will be negative, but rather that there may be a higher risk of negative overall well-being if they are expected to experience pain, discomfort, or distress. Furthermore, we point to some of the practical limitations of therapies aimed at relieving suffering, such that there is a risk that suffering will go partially or completely unrelieved. Taken together, these considerations imply that some life-prolonging treatments are not in the best interests of infants with severe life-limiting illness.



中文翻译:

危及生命的婴儿的生命价值和痛苦评估

在本文中,我们探讨了与评估患有严重限制生命的疾病的婴儿的生命审慎价值相关的三个独立问题。第一,短暂生命的价值或贬值是什么?如果她仍然会在婴儿期或很小的时候死去,那么挽救她的生命是否符合儿童的利益?第二,深度认知障碍如何影响孩子未来生活中的正负平衡?第三,如果患有限制生命的疾病的孩子的生命被延长,她将经历多少痛苦,可以减轻其中的任何痛苦吗?尽管提供了姑息治疗,这种孩子的负面经历(痛苦)是否存在风险?我们认为,如果预计儿童的寿命短且受到严重认知障碍的影响,他们幸福感的主观和客观组成部分可能会大大减少。这并不意味着他们的整体幸福感会是负面的,而是如果预计他们会经历疼痛、不适或痛苦,整体幸福感出现负面影响的风险可能会更高。此外,我们指出旨在减轻痛苦的疗法的一些实际局限性,因此存在部分或完全无法缓解痛苦的风险。综合起来,

更新日期:2021-01-12
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