End-of-Life Practices Among Tertiary Care PICUs in the United States

Meert, Kathleen L.; Keele, Linda; Morrison, Wynne; Berg, Robert A.; Dalton, Heidi J.; Newth, Christopher J. L.; Harrison, Rick; Wessel, David; Shanley, Thomas P.; Carcillo, Joseph A.; Clark, Amy; Holubkov, Richard; Jenkins, Tammara L.; Doctor, Allan; Dean, Jonathan; Pollack, Murray M.

doi:10.1097/pcc.0000000000000520

Cited by 92 publications

(68 citation statements)

References 29 publications

(49 reference statements)

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“…Detailed institutional data along with other analyses have been published. 13,21,23–25 For additional details concerning patient and site level data, outcomes, and physiological data see the supplemental materials (Supplemental Description and Details of the TOPICC Study).…”

Section: Methodsmentioning

confidence: 99%

Morbidity and mortality prediction in pediatric heart surgery: Physiological profiles and surgical complexity

Berger

Holubkov

Reeder

et al. 2017

The Journal of Thoracic and Cardiovascular Surgery

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Objectives Outcome prediction for pediatric heart surgery has focused on mortality but mortality has been significantly reduced over the last two decades. Clinical care practices now emphasize reducing morbidity. Physiology-based profiles assessed by the PRISM score are associated with new significant functional morbidity detected at hospital discharge. Our aims were to assess the relationship between new functional morbidity and surgical risk categories (RACHS and STAT), measure the performance of three-level (intact survival, survival with new functional morbidity, or death) and two-level (survival or death) PRISM prediction algorithms, and assess whether including RACHS or STAT complexity categories improves the PRISM predictive performance. Methods Patients (newborn to <18 years) were randomly selected from seven sites (December 2011 to April 2013). Morbidity (using the Functional Status Scale–FSS) and mortality were assessed at hospital discharge. The most recent published PRISM algorithms were tested for goodness-of-fit, and discrimination with and without the RACHs and STAT complexity categories. Results The mortality rate in the 1550 patients was 3.2%. Significant new functional morbidity rate occurred in 4.8%, increasing from 1.8% to 13.9% and 1.7% and 12.9% from the lowest to the highest RACHS and STAT categories, respectively. The 3-level and 2-level PRISM models had satisfactory goodness-of-fit and substantial discriminative ability. Inclusion of RACHS and STAT complexity categories did not improve model performance. Conclusion Both mortality and new, functional morbidity are important outcomes associated with surgical complexity and can be predicted using PRISM algorithms. Adding surgical complexity to the physiological profiles does not improve predictor performance.

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Section: Methodsmentioning

confidence: 99%

Morbidity and mortality prediction in pediatric heart surgery: Physiological profiles and surgical complexity

Berger

Holubkov

Reeder

et al. 2017

The Journal of Thoracic and Cardiovascular Surgery

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“…Clinical site was independently associated with likelihood of LWLS discussions. Prior CPCCRN research has shown that morality rate and mode of death did not vary significantly across sites when assessed during the same time period as the current study (35). The association between clinical site and LWLS discussions observed in this study may reflect variation in institutional practice, documentation of discussions, or other factors.…”

Section: Discussionmentioning

confidence: 52%

Limiting and Withdrawing Life Support in the PICU

Keele

Meert

Berg

et al. 2016

Pediatric Critical Care Medicine

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Objectives Most deaths in U.S. PICUs occur after a decision has been made to limitation or withdrawal of life support. The objective of this study was to describe the clinical characteristics and outcomes of children whose families discussed limitation or withdrawal of life support with clinicians during their child’s PICU stay and to determine the factors associated with limitation or withdrawal of life support discussions. Design Secondary analysis of data prospectively collected from a random sample of children admitted to PICUs affiliated with the Collaborative Pediatric Critical Care Research Network between December 4, 2011, and April 7, 2013. Setting Seven clinical sites affiliated with the Collaborative Pediatric Critical Care Research Network. Patients Ten thousand seventy-eight children less than 18 years old, admitted to a PICU, and not moribund at admission. Interventions None. Measurements and Main Results Families of 248 children (2.5%) discussed limitation or withdrawal of life support with clinicians. By using a multivariate logistic model, we found that PICU admission age less than 14 days, reduced functional status prior to hospital admission, primary diagnosis of cancer, recent catastrophic event, emergent PICU admission, greater physiologic instability, and government insurance were independently associated with higher likelihood of discussing limitation or withdrawal of life support. Black race, primary diagnosis of neurologic illness, and postoperative status were independently associated with lower likelihood of discussing limitation or withdrawal of life support. Clinical site was also independently associated with likelihood of limitation or withdrawal of life support discussions. One hundred seventy-three children (69.8%) whose families discussed limitation or withdrawal of life support died during their hospitalization; of these, 166 (96.0%) died in the PICU and 149 (86.1%) after limitation or withdrawal of life support was performed. Of those who survived, 40 children (53.4%) were discharged with severe or very severe functional abnormalities, and 15 (20%) with coma/vegetative state. Conclusions Clinical factors reflecting type and severity of illness, sociodemographics, and institutional practices may influence whether limitation or withdrawal of life support is discussed with families of PICU patients. Most children whose families discuss limitation or withdrawal of life support die during their PICU stay; survivors often have substantial disabilities.

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“…Most die in a hospital intensive care unit (ICU) via withdrawal or limitation of life-support (2, 3). Twenty percent of all pediatric deaths involve children with complex chronic conditions, and these children commonly require prolonged hospitalizations with ICU level care and mechanical ventilation (4, 5).…”

Section: Introductionmentioning

confidence: 99%

Pediatric Critical Care Transport as a Conduit to Terminal Extubation at Home: A Case Series*

Noje

Bernier

Costabile

et al. 2017

Pediatric Critical Care Medicine

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Objective To present our single-center’s experience with three palliative critical care transports home from the pediatric intensive care unit (PICU) for terminal extubation. Design, Setting, Patients All cases were identified from our institutional Pediatric Transport database. Patients in the case series were terminally ill children unable to separate from mechanical ventilation in the PICU, who were transported home between January 1, 2012 and December 31, 2014 for terminal extubation and end-of-life care according to their families’ wishes. Interventions, Measurements, Main Results The rate of palliative care transports home for terminal extubation during the study period was 2.6 per 100 deaths. The patients were 7 months, 6 years, and 18 years old and had complex chronic conditions. The transfer process was protocolized. The families were approached by the PICU staff during multidisciplinary goals-of-care meetings. Parental expectations were clarified and home hospice care was arranged pre-transfer. All transports were performed by our pediatric critical care transport team, and all terminal extubations were performed by physicians. All patients had unstable medical conditions and urgent needs for transport to comply with the families’ wishes for withdrawal of life-support and death at home. As such, all three cases presented similar logistical challenges, including establishing do-not-resuscitate status pre-transport, having limited time to organize the transport, and coordinating home palliative care services with available community resources. Conclusions Though a relatively infrequent practice in pediatric critical care, transport home for terminal extubation represents a feasible alternative for families seeking out-of-hospital end-of-life care for their critically ill technology-dependent children. Our single-center experience supports the need for development of formal programs for end-of-life critical care transports to include patient screening tools, palliative care home discharge algorithms, transport protocols, and resource utilization and cost analyses.

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End-of-Life Practices Among Tertiary Care PICUs in the United States

Cited by 92 publications

References 29 publications

Morbidity and mortality prediction in pediatric heart surgery: Physiological profiles and surgical complexity

Morbidity and mortality prediction in pediatric heart surgery: Physiological profiles and surgical complexity

Limiting and Withdrawing Life Support in the PICU

Pediatric Critical Care Transport as a Conduit to Terminal Extubation at Home: A Case Series*

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