title: Toward interventions to improve end-of-life care in the pediatric intensive care unit.
abstract: Although children account for only about 3% of all deaths that occur in the United States each year, these patients and their families have needs that are uniquely different from those of adult patients. To date, however, no research on interventions to improve end-of-life care in the pediatric intensive care unit (PICU) has been performed. This review seeks to facilitate and inform future interventional studies by summarizing existing descriptive data about end-of-life care in this setting. These data are organized around six domains that have been identified as critical to high-quality, family-centered care: 1) support of the family unit; 2) communication with the child and family about treatment goals and plans; 3) ethics and shared decision making; 4) relief of pain and other symptoms; 5) continuity of care; and 6) grief and bereavement support. These data are integrated and used to develop evidence-based suggestions for a variety of interventions that could be implemented and then evaluated for their potential contribution to improving the care of children dying in the PICU.
authors.affiliation: Medical Ethics, Harvard Medical School, Boston, Massachusetts, USA.
authors.forename: Robert D
authors.initials: RD
authors.lastname: Truog
authors.forename: Elaine C
authors.initials: EC
authors.lastname: Meyer
authors.forename: Jeffrey P
authors.initials: JP
authors.lastname: Burns
mesh_terms: D001601:Bereavement; D003142:Communication; D003266:Continuity of Patient Care / Q000941:ethics / Q000458:organization & administration; D003657:Decision Making; D005190:Family; D006801:Humans; D015278:Intensive Care Units, Pediatric / Q000458:organization & administration*; D010166:Palliative Care / Q000941:ethics / Q000458:organization & administration*; D011787:Quality of Health Care / Q000458:organization & administration*; D013727:Terminal Care / Q000941:ethics / Q000458:organization & administration*