Death talk and access gaps: applying a personalist lens to address inequities for children with complex conditions at the end of life.

Abstract

Children with complex care needs lack access to Specialized Pediatric Palliative care in Canada. At the same time, death is increasingly being handled in a mechanized and specialized manner, with hospitals becoming the expected place for death to occur. Although this is true for some children, the meaning of dying and death is obscured for dying children in Canadian healthcare. Specifically, discussions about dying and death, what they are and what they mean to children are relatively absent in Canadian healthcare contexts. This lack of death talk is a problem for children with medically complex conditions and their families since death is a part of living, and palliative care is essential for children who are living and dying with medical complexity. To address the health disparity that these children face concerning access to pediatric palliative care and having honest conversations about death, it is essential to attend to the bioethics and care frameworks undergirding pediatric healthcare to understand how the meaning of living, dying and death is being valued for this population. Subsequently, in this paper, we will explore a personalist bioethics approach to mitigate these end-of-life disparities.