Hospitalized children constitute most annual pediatric deaths in the United States. The details of “how-to” provide end-of-life (EOL) care are not consistently taught to staff and therefore the actual delivery of EOL care is often inconsistent and invariably negatively associated with the long-term mental health of both the patient’s family and care providers. This review describes the pertinent aspects of end-of-life care in pediatrics. Finally, a framework to optimize the quality of death is described, which underscores the importance of synchrony between the care team and the family at the end of a child’s life.
Key points
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How care is delivered to the dying child carries remarkable consequence.
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Preparation of a child and family for the end of life is vital.
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The use of pediatric palliative care services can be invaluable for the preparation of a family for a child’s death.
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Cultural-specific differences toward dying patients are common.
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A systematic approach to end-of-life care can be created by understanding the critical elements for family and staff and the barriers that need to be overcome.
Introduction: understanding the “Who”
Although traditionally reported as an “uncommon” occurrence, more than 55,000 children die annually in the United States. An additional estimated 500,000 children confront life-threatening illnesses yearly. Of the children who die, nearly half are outside the neonatal population. For these children, a vast majority are hospitalized at the time of their deaths and most end-of-life (EOL) care occurs in tertiary hospital settings, typically in the intensive care units (ICU) (neonatal, pediatric, and cardiac). This pattern of hospitalization, independent of age stratification, is consistent regardless of the primary etiology of death ( Table 1 ). In the ICU, most deaths are “planned,” that is, they follow a withdrawal of life-sustaining treatment.
| Rank | Infant <1 y | 1–4 y | 5–14 y | 14–25 y |
|---|---|---|---|---|
| 1 | Congenital | Accidents | Accidents | Accidents |
| 2 | Prematurity | Congenital | Malignancy | Homicide |
| 3 | SIDS | Malignancy | Homicide | Suicide |
| 4 | Pregnancy related | Homicide | Congenital | Malignancy |
| 5 | RDS | Cardiac | Cardiac | Cardiac |
| 6 | Placental related | Respiratory | Suicide | Congenital |
| 7 | Accidents | Perinatal injury | Respiratory | Respiratory |
| 8 | Sepsis | Sepsis | Benign oncology | Oncology |
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