Dying, dependency and death: Exploring palliative care access gaps for children.

Abstract

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.