Department of Pediatrics and Center for Ethics in Health Care, Oregon Health and Science University, Portland, Oregon
Pediatrics. 2020 Aug;146(Suppl 1):S70-S74. doi: 10.1542/peds.2020-0818N.
The alleviation of suffering has always been central to the care of the sick. Yet as medical technology has advanced and life-sustaining treatments multiplied, medicine's capacity to both prevent and create suffering has grown exponentially. In pediatric medicine, the ability to stave off death with life-sustaining treatments allows children to survive but also to suffer in ways that are diverse and unprecedented. However, although parents and pediatric clinicians broadly agree that all children can suffer, there is little published literature in which researchers analyze or clarify the concept of pediatric suffering. This gap is worrisome, especially in light of growing concerns that the label of suffering is used to justify end-of-life decision-making and mask quality-of-life determinations for pediatric patients with profound neurologic impairment. Moreover, the awareness that some children can experience suffering but cannot communicate whether and how they are suffering creates a problem. Does the determination of suffering in a nonverbal child lie in the judgement of clinicians or parents? In this article, I will address several important questions related to the suffering of children through an analysis of two prevalent conceptualizations of pediatric suffering and suggest a possible avenue forward for future scholarship.
减轻痛苦一直是医疗护理的核心。然而，随着医学技术的进步和维持生命的治疗方法的增加，医学预防和制造痛苦的能力呈指数级增长。在儿科医学中，通过维持生命的治疗来避免死亡的能力使儿童得以存活，但也使他们以多样化且前所未有的方式遭受痛苦。然而，尽管父母和儿科临床医生普遍同意所有儿童都可能遭受痛苦，但在研究人员分析或澄清儿科痛苦概念的已发表文献中，这方面的内容很少。这一差距令人担忧，尤其是考虑到人们越来越担心，将痛苦的标签用于为患有严重神经损伤的儿科患者做出临终决策，并掩盖其生活质量的决定。此外，一些儿童可能会经历痛苦但无法表达他们是否以及如何遭受痛苦的意识，这造成了一个问题。无法言语的儿童的痛苦判断取决于临床医生还是父母的判断？在本文中，我将通过分析两种常见的儿科痛苦概念，来探讨与儿童痛苦相关的几个重要问题，并为未来的学术研究提出一条可能的途径。
