Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement

Abstract

Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the trajectory of illness and can peak around the time of death or non-death losses. The objective of this study was to assess how PICUs around the world implement grief and bereavement care (GBC) as part of an integrated model of care. This is a multicenter cross-sectional, prospective survey study. Questionnaires with multiple-choice and open-ended questions focusing on unit infrastructure, personnel, policies, limited patient data, and practices related to GBC for families and health care professionals (HCPs) were completed by on-site researchers, who were HCPs on the direct care of patients. PICU fulfillment of GBC goals was evaluated using a custom scoring based on indicators developed by the Initiative for Pediatric Palliative Care (IPPC). We compared average total and individual items fulfillment scores according to the respective country's World Bank income. Patient characteristics and details of unit infrastructure were also evaluated as potential predictors of total GBC fulfillment scores. Statistical analysis included multilevel generalized linear models (GLM) with a Gaussian distribution adjusted by child age/gender and clustering by center, using high income countries (HICs) as the comparative reference. Additionally, we applied principals of content analysis to analyze and summarize open-ended answers to contextualize qualitative data. The study included 34 PICUs from 18 countries: high-income countries (HICs): 32.4%, upper middle-income countries (UMICs): 44.1%, low middle-income and low-income countries (LMI/LICs): 23.5%. All groups reported some compliance with GBC goals; no group reported perfect fulfillment. We found statistically significant differences in GBC fulfillment scores between HICs and UMICs (specifically, HCP grief support), and between HICs and LMICs (specifically, family grief support and HCP grief support). PICUs world-wide provide some GBC, independent of income, but barriers include lack of financial support, time, and training, overall unit culture, presence of a palliative care consultation service, and varying cultural perceptions of child death. Disparities in GBC for families and HCPs exist and were related to the native countries' income level. Identifying barriers to support families and HCPs, can lead to opportunities of improving GBC in PICUs world-wide.

Extracorporeal membrane oxygenation and paediatric palliative care in an ICU

“…44 These findings support the involvement of the palliative care team in providing longitudinal psychosocial-spiritual support to children and their families to improve overall quality of life, increase family satisfaction with care, and reduce health care utilisation. 7,47 Lastly, involving palliative care early allows time for the palliative care team to build rapport, and assess the needs and goals of the family while providing psychosocial support to the family and health care team through the disease's trajectory as well as at the end of life care especially considering that the mortality rates among children supported on extracorporeal membrane oxygenation are high. [48][49][50] None of the children who died within 48 hours of extracorporeal membrane oxygenation cannulation received a palliative care consultation, yet these children were in the hospital for at least 3 days prior to cannulation, providing a window of opportunity for early consultation.…”

End-of-life decisions and practices as viewed by health professionals in pediatric critical care: A European survey study

“…Several studies outline the importance of providing grief and bereavement support to both the patient-family unit and the healthcare professionals (HCPs) involved. Such support is vital to allow healthcare professionals (HCP) to continue to provide ongoing high-quality EOL care ( 13 – 16 ). The international Paediatric Intensive Care Unit Model of Integrated Care study reported global disparities in PIC grief and bereavement care provision ( 16 ).…”

“…Such support is vital to allow healthcare professionals (HCP) to continue to provide ongoing high-quality EOL care ( 13 – 16 ). The international Paediatric Intensive Care Unit Model of Integrated Care study reported global disparities in PIC grief and bereavement care provision ( 16 ). Despite individual national reports ( 6 , 8 , 14 ), there is no broad overview of contemporary EOL practice in European PIC though one study, performed over a decade ago, did investigate decision-making in the forgoing of life-sustaining therapy by PIC physicians and nurses ( 17 ).…”

“…How PIC EOL decisions are made has important consequences on the quality and effectiveness of the child's care, the team's relationship with the family, the hospital team's functioning, and the long-term well-being of the PIC workforce ( 21 ). The last is increasingly recognised as vital given the increasing workforce pressures and prevalence of moral distress, fatigue and burnout reported in PIC teams ( 16 , 21 , 22 ). In addition, PIC-HCPs face novel challenges in delivering recurrent EOL care with the expanding use of prolonged technological support, such as ECMO, and innovative attempts at cure ( 23 ).…”

“…In addition, PIC-HCPs face novel challenges in delivering recurrent EOL care with the expanding use of prolonged technological support, such as ECMO, and innovative attempts at cure ( 23 ). There is an increasing focus on PIC teams' resilience and situational self-awareness to ensure they can continue to deliver care ( 16 ), with individual or collective interventions including relevant education processes or debriefs ( 21 ).…”