Assessment of an Instrument to Measure Interdisciplinary Staff Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit

Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children and families at end of life. To evaluate the Pediatric Intensive...

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Bibliographic Details
Published in:JAMA network open 2022-05, Vol.5 (5), p.e2210762-e2210762
Main Authors: Bailey, Valerie, Beke, Dorothy M, Snaman, Jennifer M, Alizadeh, Faraz, Goldberg, Sarah, Smith-Parrish, Melissa, Gauvreau, Kimberlee, Blume, Elizabeth D, Moynihan, Katie M
Format: Article
Language:English
Subjects:
Cardiopulmonary resuscitation
CPR
Intensive care
Interdisciplinary aspects
Online Only
Original Investigation
Palliative care
Pediatrics
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Summary:Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children and families at end of life. To evaluate the Pediatric Intensive Care Unit Quality of Dying and Death (PICU-QODD) instrument and examine differences between disciplines and end-of-life circumstances. This cross-sectional survey included staff at a single center involved in pediatric CICU deaths from July 1, 2019, to June 30, 2021. Staff demographic characteristics, intensity of end-of-life care (mechanical support, open chest, or cardiopulmonary resuscitation [CPR]), mode of death (discontinuation of life-sustaining therapy, treatment limitation, comfort care, CPR, and brain death), and palliative care involvement. PICU-QODD instrument standardized score (maximum, 100, with higher scores indicating higher quality); global rating of quality of the moment of death and 7 days prior (Likert 11-point scale, with 0 indicating terrible and 10, ideal) and mode-of-death alignment with family wishes. Of 60 patient deaths (31 [52%] female; median [IQR] age, 4.9 months [10 days to 7.5 years]), 33 (55%) received intense care. Of 713 surveys (72% response rate), 246 (35%) were from nurses, 208 (29%) from medical practitioners, and 259 (36%) from allied health professionals. Clinical experience varied (298 [42%] ≤5 years). Median (IQR) PICU-QODD score was 93 (84-97); and quality of the moment of death and 7 days prior scores were 9 (7-10) and 5 (2-7), respectively. Cronbach α ranged from 0.87 (medical staff) to 0.92 (allied health), and PICU-QODD scores significantly correlated with global rating and alignment questions. Mean (SD) PICU-QODD scores were more than 3 points lower for nursing and allied health compared with medical practitioners (nursing staff: 88.3 [10.6]; allied health: 88.9 [9.6]; medical practitioner: 91.9 [7.8]; P 
ISSN:2574-3805
2574-3805
DOI:10.1001/jamanetworkopen.2022.10762