title: Lighting the way: improving the way children die in America.
abstract: The death of an infant or child is a special sorrow, leaving a devastating and enduring impact that demands of us the very best we can offer to prevent and relieve suffering--for the child as well as the family. Pediatric end-of-life care is very different from adult palliative and hospice care and thus requires specialized knowledge and training to address the unique needs of these patients. In the wake of a recent Institute of Medicine (IOM) report on palliative and end-of-life care for children, there is a momentous opportunity to shed light on the scarcity of palliative and hospice care services for infants and children. A new coalition of pediatric hospice and palliative care leaders has been formed to serve as a unified voice for the leaders in the field, and the parents and children with which they work. This article examines the work of the coalition, the unique nature of pediatric end-of-life care, and the opportunities to effect change afforded by the release of the IOM report.
authors.affiliation: San Diego Hospice, USA. LSumner@SDHospice.org
authors.forename: Lizabeth H
authors.initials: LH
authors.lastname: Sumner
mesh_terms: D001293:Attitude to Death; D002648:Child; D002983:Clinical Competence; D006265:Health Care Coalitions; D006301:Health Services Needs and Demand; D017051:Hospice Care / Q000592:standards*; D006801:Humans; D007223:Infant; D015969:National Academies of Science, Engineering, and Medicine, U.S., Health and Medicine Division; D010166:Palliative Care / Q000592:standards*; D010371:Pediatric Nursing / Q000592:standards*; D011368:Professional-Family Relations; D011785:Quality Assurance, Health Care / Q000458:organization & administration*; D013727:Terminal Care / Q000592:standards*; D014481:United States