Oxford Uehiro Centre for Practical Ethics, Faculty of Philosophy, University of Oxford, Oxford, UK.
Wellcome Centre for Ethics and Humanities, University of Oxford, Oxford, UK.
Theor Med Bioeth. 2020 Aug;41(4):179-196. doi: 10.1007/s11017-020-09532-x. Epub 2020 Dec 17.
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.
在本文中，我们探讨了三个与评估患有严重生命限制疾病的婴儿的审慎生命价值相关的独立问题。首先，短暂的生命有何价值或无价值？如果一个孩子在婴儿期或幼儿期内仍将死亡，那么拯救她的生命是否符合她的利益？其次，严重认知障碍如何影响孩子未来生活中的正负平衡？第三，如果患有生命限制疾病的孩子的生命得以延长，她将经历多少痛苦，能否减轻任何痛苦？对于这样一个孩子（痛苦），是否存在负面经历仍然存在的风险，尽管提供了姑息治疗？我们认为，如果孩子预期寿命短暂且受到严重认知障碍的影响，那么他们的主观和客观幸福感都会大大降低。这并不意味着他们的整体幸福感将是负面的，而是说如果他们预计会经历疼痛、不适或痛苦，那么他们整体幸福感呈负面的风险可能更高。此外，我们还指出了一些旨在减轻痛苦的治疗方法的实际局限性，因此存在痛苦部分或完全无法缓解的风险。综上所述，这些考虑表明，一些延长生命的治疗方法并不符合患有严重生命限制疾病的婴儿的最佳利益。
