70 percent of Americans who die each year are elderly adults, most of this attention understandably focuses on their circumstances and needs.
Nonetheless, even in affluent countries, children still die—approximately 55,000 in the United States in 1999. Each of these deaths brings loss, change, and enduring grief to the family. Each death also affects a broader circle of friends, neighbors, schoolmates, and others in the community who may feel distress and a sense of kinship, even if they do not personally know the child or family.
Care for children necessarily differs from care for adults, reflecting children’s developing physiological, psychological, and cognitive characteristics and their legal, ethical, and social status. These differences are reflected in the development of pediatric specialties in medicine and other health professions, the creation of pediatric hospitals and other care settings, and the growth of educational programs and research dedicated to improving care for children. Professionals in the evolving fields of palliative and end-of-life care are understanding the need to apply their principles to children and considering how to train palliative care specialists as well as others who regularly care for children and families facing medical problems that are likely to end in the child’s death. The importance of such efforts is increasingly being recognized (see, e.g., Armstrong-Dailey and Goltzer, 1993; Armstrong-Dailey and Zarbock, 2002; ChIPPS, 2001; Goldman, 1996; Hilden et al., 2001b; Levetown, 2001; Linke, 2002; Rushton, 2001; Trafford, 2001).
This report examines what is known about the needs of children with life-threatening medical problems and their families and the extent to which these needs are being met. It also presents suggestions and recommendations for strategies to provide more effective, compassionate, and reliable palliative, end-of-life, and bereavement care.
When Rosario Maria was born with severe brain injury, she was given two days to live. She survived eight years. . . . It was noticeable that when we finally decided to take the inevitable steps that would lead to her death, the medical staff stopped considering her as a priority.
Rosario Avila, parent, 2001
Many physicians, nurses, social workers, and others provide excellent, sensitive palliative, end-of-life, and bereavement care to children and their families. Nonetheless, as later chapters in this report describe in more depth, shortcomings in care can too frequently be found. Effective, compassionate, reliable palliative and end-of-life care has not usually been a priority for