Assessment of an Instrument to Measure Interdisciplinary Staff Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit
Authors: Valerie Bailey, Dorothy M. Beke, Jennifer M. Snaman, Faraz Alizadeh, Sarah Goldberg, Melissa Smith-Parrish, Kimberlee Gauvreau, Elizabeth D. Blume, Katie M. Moynihan
Journal: JAMA Network Open (2022)

<h3>Importance</h3> 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. <h3>Objectives</h3> 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. <h3>Design, Setting, and Participants</h3> This cross-sectional survey included staff at a single center involved in pediatric CICU deaths from July 1, 2019, to June 30, 2021. <h3>Exposures</h3> 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. <h3>Main Outcomes and Measures</h3> 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. <h3>Results</h3> 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];<i>P</i> &lt; .001) and for less experienced staff (eg, &lt;2 y: 87.7 [8.9]; &gt;15 y: 91,<i>P</i> = .002). Mean PICU-QODD scores were lower for patients with comorbidities, surgical admissions, death following treatment limitation, or death misaligned with family wishes. No difference was observed with palliative care involvement. High-intensity care, compared with low-intensity care, was associated with lower median (IQR) rating of the quality of the 7 days prior to death (4 [2-6] vs 6 [4-8];<i>P</i> = .001) and of the moment of death (8 [4-10] vs 9 [8-10];<i>P</i> =.001). <h3>Conclusions and Relevance</h3> In this cross-sectional survey study of CICU staff, the PICU-QODD showed promise as a reliable and valid clinician measure of quality of dying and death in the CICU. Overall QODD was positively perceived, with lower rated quality of 7 days prior to death and variation by staff and patient characteristics. Our data could guide strategies to meaningfully improve CICU staff well-being and end-of-life experiences for patients and families.