Lamb Christina
Faculty of Health Disciplines, Athabasca University, Athabasca, Alberta, T9SJA3, Canada.
CCBI, St. Michael's College, University of Toronto, Toronto, Ontario, M5S1J4, Canada.
Wellcome Open Res. 2024 Mar 1;9:120. doi: 10.12688/wellcomeopenres.20803.1. eCollection 2024.
Death has become a medicalized event. As such, end-of-life care has become entrenched in an over-reliance on individual patient autonomy to guide ethical decision making. Subsequently, the process of dying and the event of death are not primarily valued as life events - that is, as life-affirming phases of living. Rather, dying and death are viewed through the lens of medical options of when and how to die versus why dying and death are meaningful. This presents a problem for addressing the pediatric palliative care access gap and the Global Common Good. Specifically, in the context of important life events, one of which is death, we need space to be dependent on our inter-personal relationships to make crucial life decisions that affect our well-being. Recognizing dependency and inter-personalism is particularly important for pediatric populations. Children are uniquely placed to draw on their families and caregivers to make affirming life decisions in end-of-life care. This is particularly challenging to do in the Canadian context when Specialized Pediatric Palliative Care is not equitably available but options such as assisted death may soon be. Importantly, the meaning of death and dying is largely unexplored for this population. To advance ethical care at the end-of-life, more emphasis needs to be placed on the meaning that end of life events hold for Canadian children. In this paper I will outline the relevance of dependency and inter-personalism to attend to dying and death as meaningful phases of living for Canadian children and in relation to the pediatric palliative care access gap, the Global Common Good and Global Health Bioethics.
死亡已成为一种被医学化的事件。照此情形，临终关怀已深深陷入对个体患者自主权的过度依赖之中，以此来指导伦理决策。随后，死亡过程和死亡事件并未被主要视作生命事件——也就是说，未被视作生命中肯定生命的阶段。相反，死亡和临终是从何时以及如何死亡的医学选择角度来审视的，而非从死亡和临终为何有意义的角度。这给解决儿科姑息治疗可及性差距和全球共同利益带来了问题。具体而言，在诸如死亡这样的重要生命事件背景下，我们需要空间来依赖人际关系，以便做出影响自身幸福的关键生命决策。认识到依赖性和人际观念对于儿科人群尤为重要。儿童在临终关怀中特别适合借助其家庭和照料者来做出肯定生命的决策。在加拿大的背景下，这尤其具有挑战性，因为专门的儿科姑息治疗并非公平可得，而诸如协助死亡等选择可能很快就会出现。重要的是，对于这一人群，死亡和临终的意义在很大程度上尚未得到探究。为了推进临终时的伦理关怀，需要更加重视生命终期事件对加拿大儿童所具有的意义。在本文中，我将概述依赖性和人际观念对于将死亡和临终视为加拿大儿童有意义的生命阶段的相关性，以及与儿科姑息治疗可及性差距、全球共同利益和全球健康生物伦理学的关系。
