Alterations in End-of-Life Support in the Pediatric Intensive Care Unit

Abstract

WHAT'S KNOWN ON THIS SUBJECT:Studies from the 1990s demonstrated limitation of end-of-life support in 30% to 58% of US PICU deaths. Little has been published from the United States since that time. More-recent publications from Australia showed limitation in 74% to 84% of deaths. WHAT THIS STUDY ADDS:The authors address a gap in the literature by describing recent end-of-life support practices in 30 PICUs across the United States. abstract OBJECTIVE: Our purpose was to examine alterations in end-of-life support in a multiinstitutional sample of PICUs. METHODS:This was a retrospective, descriptive study. Variables collected included end-of-life support category, race, length of stay, operative status, reason for admission, and Pediatric Index of Mortality 2 score, as well as the number of ICU beds and the presence of trainees. RESULTS:There were 1745 deaths at 35 institutions between January 1, 2004, and September 30, 2005. Of those, 1263 had complete data and were analyzed. The end-of-life support category distribution was as follows: brain death, 296 (23%); do not resuscitate, 205 (16%); limitation of support, 36 (3%); withdrawal of support, 579 (46%); no limitation, 124 (10%); no advance directives, 23 (2%). For further analyses, end-of-life support categories were grouped as limitation (ie, do not resuscitate, limitation of support, or withdrawal of support) versus no limitation (ie, no limitation or no advance directive). Brain death was not included in further analyses. The majority of deaths were in the limitation group (n ϭ 820 [85%]), and 12 (40%) of 30 institutions had 100% of deaths in this group. There were significant differences between institutions (P Ͻ .001). Decisions for limitation were seen less frequently in the black race (112 [76%] of 147 deaths; P ϭ .037) and in institutions with no trainees (56 [69%] of 81 deaths; P Ͻ .001). CONCLUSIONS:

Pediatric Palliative Care: Current Evidence and Evidence Gaps

“…34,35 Death in the PICU continues to be common in children after withdrawal of technological support. 38 Whether the involvement of a PPC team leads to earlier limits on resuscitative efforts Technology-based decision aids (eg, videos, apps) for parents and pediatric patients How and where patients die PPC teams help shift the location of death away from PICU and inpatient settings to home and hospice settings. 37,39,41,62 Identification and clarification of factors that influence the preferred location of death Building a better healthcare system Barriers to palliative care Uncertain patient prognosis.…”

“…37 Nonetheless, children with advanced heart, lung, immune, and infectious diseases continue to die in the PICU after receiving highly technical medical support at the end of life and after the withdrawal of life-sustaining interventions. 33,36,38 Patients and families vary in terms of preference for location of end-of-life care, 39 and the majority of children die in a hospital setting. 40 This can actively change to home deaths with PPC involvement.…”

Family Experience and PICU Death: A Meta-Synthesis

“…7,8 Research from Australia, 4,5,9 the United States, 10,11 and the United Kingdom 1 has found that children most frequently die as a result of withdrawal of life support, whereas studies from Brazil, 3 France, and Eastern and Central Europe 2 identify that most children die in PICUs as a result of failed cardiopulmonary resuscitation. Some have argued that this can be attributed largely to cultural differences related to end-oflife care practices and the social acceptance of the death of a child.…”

Brain Death in Children

“…Brain death is a distinct mode of death both in adult and pediatric population; it is estimated that BD accounts for approximately 16-23% of deaths in the pediatric intensive care unit (PICU), while the corresponding values for adults are quite similar and depending on the nature of the unit, rising from 15% in multidisciplinary units up to 30% in neurocritical units [3][4][5][6]. Most research about BD involves adults; however, not all principles regarding BD could be transferred to children.…”