Living Life to the Fullest: Early Integration of Palliative Care into the Lives of Children with Chronic Complex Conditions

Adam      Rapoport; Laura      Beaune; Kevin      Weingarten; Maria      Rugg; Christine      Newman

Abstract

Increasing numbers of children living with chronic complex conditions also means an increase in the number of children with a potentially life-threatening illness. While curative and life-prolonging therapies continue to stretch the boundaries of what is possible, pediatric mortality remains highest among this group of children. In light of their medical fragility and unpredictable trajectories, children with chronic complex conditions are ideal candidates for palliative care. Integration of palliative care concurrently with curative or life-prolonging therapies results in improved outcomes and is widely endorsed as the most appropriate model of care for this population of children. This paper dispels common misconceptions about pediatric palliative care and outlines the benefits realized by children living with chronic complex conditions, and their families, when palliative care is introduced early in the course of their illness. Practical suggestions to facilitate difficult conversations and to manage challenging clinical situations are provided.

Keywords: Chronic complex conditions, pediatric palliative care, end of life care, quality of life, hope, advance care planning, death, bereavement, grief