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parents, the family, and the broader community react to the crisis of life-threatening illness and experience a child’s loss? Finally, how should the American health care system incorporate attention to cultural difference in efforts to reform and improve care for children living with life-threatening and terminal illness and their families? To answer these questions we provide an overview of what is known about the relevance of cultural difference in health care for children and families, specifically focused on end-of-life care and bereavement.
When cultural difference is considered, we generally think of differences among families from varied ethnic backgrounds. “Ethnocultural” background influences all aspects of health care, nowhere more profoundly than when death is near. Even patients and families who appear well integrated into U.S. society may draw heavily on the resources of cultural background (particularly spirituality) when experiencing and responding to death. When cultural gaps between families and health care providers are profound—accentuated by language barriers and varied experience shaped by social class—negotiating the difficult transitions on the path to a child’s death, always a daunting challenge, becomes even more difficult. All domains of end-of-life care are shaped by culture, including the meaning ascribed to illness, the actual language used to discuss sickness and death (including whether death may be openly acknowledged), the symbolic value placed on a child’s life (and death), the lived experience of pain and suffering, the appropriate expression of pain, the styles and background assumptions about family decision making, the correct role for a healer to assume, the care of the body after death, and appropriate expressions of grief. When the patient’s family and health care providers do not share fundamental assumptions and goals the challenges are daunting. Even with excellent and open communication—the foremost goal of culturally appropriate care— barriers remain. Differences in social class and religious background may further accentuate the profound challenge pediatric palliative care presents to the health care system.
Throughout the latter half of the twentieth century and continuing today, the death of a child has been considered a tragedy of the first order in the United States. For the family, few experiences are as difficult to navigate and to survive emotionally, physically, and economically intact. Significant health care resources have been devoted to forestalling premature death in children and newborns, often with great success, such as in the treatment of childhood cancers. The high cost of intensive care for premature newborns may be lamented, but services are rarely questioned or denied. Some might argue that this devotion to forestalling death in childhood is itself a deeply rooted cultural feature of U.S. society, expressed vividly in the priorities of the political and medical care systems.
The question of whether the loss of a child is experienced in a funda-