Future Echoes in Pediatric Palliative Care: Becoming Sensitive to Language

Abstract

As the specialty of pediatric palliative care emerges and develops, finding language to describe the complexity of “living while dying” is a challenge. Terms such as “life-limiting” and “life-threatening” are commonly used, but may not be sensitive enough to capture the experience of children and their families due to the restrictions and power at play in the history of the words “limit” and “threat”. The search for the right words to use when speaking of children who are living while dying takes us to the language of metaphor and poetry that speaks to us in a different way, a way that encompasses not only the suffering, but also the dreams, hopes, and joys of children and families. Our preferred use of language also provides more than factual statements ever can, by speaking to the hearts and souls of health care providers who share precious moments with these families.