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

Author:

Sisk Bryan A.1,Feudtner Chris2,Bluebond-Langner Myra34,Sourkes Barbara5,Hinds Pamela S.6,Wolfe Joanne78

Affiliation:

1. Division of Hematology and Oncology, Department of Pediatrics, Washington University, St Louis, Missouri;

2. Department of Medical Ethics, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania;

3. Louis Dundas Centre for Children’s Palliative Care, Great Ormond Street Institute of Child Health, University College London, London, United Kingdom;

4. Department of Anthropology, Sociology and Criminal Justice, Rutgers University, Camden, New Jersey;

5. Department of Pediatrics, Stanford University School of Medicine, Stanford University, Stanford, California;

6. Department of Nursing Research and Quality Outcomes, Children’s National Health System, Washington, DC;

7. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts; and

8. Department of Pediatrics, Boston Children’s Hospital, Boston, Massachusetts

Abstract

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.

Publisher

American Academy of Pediatrics (AAP)

Subject

Pediatrics, Perinatology, and Child Health

Reference100 articles.

1. The nature of suffering and the goals of medicine;Cassel;N Engl J Med,1982

2. Care of the dying child;Green;Pediatrics,1967

3. Trends in infectious disease mortality in the United States during the 20th century;Armstrong;JAMA,1999

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