These guidelines identify the evidence base for best practices for family-centered care in the ICU. All recommendations were weak, highlighting the relative nascency of this field of research and the importance of future research to identify the most effective interventions to improve this important aspect of ICU care.

Objective To determine the epidemiology of death in pediatric intensive care units (PICUs) at 5 geographically diverse teaching hospitals across the United States. Design, Setting, and Patients In the PICUs of five teaching hospitals across the United States, we prospectively identified 192 consecutive patients who died prior to PICU discharge. Each site enrolled between 24 and 50 patients. Each PICU had similar organizational and staffing structures. Interventions None Measurements and Main Results The overall mortality rate was 2.39% (range 1.85% to 3.38%). 133 (70%) patients died following the withholding or withdrawal of life-sustaining treatments, 30 (16%) were diagnosed as brain dead, and 26 (14%) died following an unsuccessful resuscitation attempt. Fifty-seven percent of all deaths occurred within the first week of admission;these patients, who were more likely to have new onset illnesses or injuries, included the majority of those who died following unsuccessful CPR attempts or brain death diagnoses. Patients who died beyond one week length-of-stay in the PICU were more likely to have pre-existing diagnoses, to be technology dependent prior to admission, and to have died following the withdrawal of life-sustaining treatment. Only 64% of the patients who died following the withholding or withdrawing of life support had a formal DNR order in place at the time of their death. Conclusions The mode of death in the PICU is proportionally similar to that reported over the past two decades, while the mortality rate has nearly halved. Death is largely characterized by two fairly distinct profiles that are associated with whether death occurs within or beyond one week length-of-stay. Decisions not to resuscitate are often made in the absence of a formal DNR order. These data have implications for future quality improvement initiatives, especially around palliative care, end-of-life decision making, and organ donation.