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Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children

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Sisk, B. A.; Feudtner, C.; Bluebond-Langner, M.; Sourkes, B.; Hinds, P. S.; Wolfe, J.

Most pediatric clinicians aspire to promote the physical, emotional, and developmental well-being of children, hoping to bestow a long and healthy life. Yet, some infants, children, and adolescents confront life-threatening illnesses and life-shortening conditions. Over the past 70 years, the clinician's response to the suffering of these children has evolved from veritable neglect to the development of pediatric palliative care as a subspecialty devoted to their care. In this article, we review the history of how clinicians have understood and responded to the suffering of children with serious illnesses, highlighting how an initially narrow focus on anxiety eventually transformed into a holistic, multidimensional awareness of suffering. Through this transition, and influenced by the adult hospice movement, pediatric palliative care emerged as a new discipline. Becoming a discipline, however, has not been a panacea. We conclude by highlighting challenges remaining for the next generation of pediatric palliative care professionals to address.

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