The intense grief associated with the loss of a child creates shared experiences, but Spanish- and English-speaking parents describe their hospice experiences in different ways. Additional studies in pediatric hospice care are warranted to improve the care we provide to children at the end of life.

These results indicate that race/ethnicity and diagnosis are likely to play a role in hospice enrollment during childhood. A striking number of patients of all race/ethnicities left hospice prior to death. More studies describing the impact of culture on end of life decision-making and the hospice experience in childhood are warranted.

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Hospice is an important provider of end of life care; many children who die of cancer enroll in hospice programs. How frequently such children remain in hospice to die at home, or disenroll from hospice and die in the hospital, has not been described. A child's location of death has important implications for quality of life and parental adaptation. This represents a subanalysis of a retrospective study of 202 consecutive oncology patients who died at a single center between January 1, 2006 and December 31, 2010. Of 95 children who enrolled in hospice, 82 had known location of death. Sixty (73%) died at home or an inpatient hospice unit, 15 (18%) died in the oncology unit, 5 (6%) died in the intensive care unit, and 2 (2%) died in the emergency department. The median length of hospice services was 41 days, twice the national median of 21 days reported in adults. One quarter of children disenrolled from hospice care, ultimately dying in an acute care setting. Further studies are warranted to explore the hospice experience in children, and to address modifiable factors that may impact a family's choice to withdraw from hospice care.

All eight NCP domains were validated in pediatric HBHPC. A ninth domain, Continuity and Coordination of Care, was also added. Ranking the domains was not recommended as consensus indicated weighting them as equally integrated standards. Future studies are needed to evaluate parent- and patient-prioritized domains of quality in pediatric HBHPC and to validate and map pediatric-specific indicators to these domains.