Pediatric palliative care in the intensive care unit and questions of quality: a review of the determinants and mechanisms of high-quality palliative care in the pediatric intensive care unit (PICU)

Abstract

This article reviews the state and practice of pediatric palliative care (PC) within the pediatric intensive care unit (PICU) with specific consideration of quality issues. This includes defining PC and end of life (EOL) care. We will also describe PC as it pertains to alleviating children's suffering through the provision of "concurrent care" in the ICU environment. Modes of care, and attendant strengths, of both the consultant and integrated models will be presented. We will review salient issues related to the provision of PC in the PICU, barriers to optimal practice, parental, and staff perceptions. Opportunity areas for quality improvement and the role of initiatives and measures such as education, family-based initiatives, staff needs, symptom recognition, grief, and communication follow. To conclude, we will look to the literature for PC resources for pediatric intensivists and future directions of study.

Palliative and end-of-life care practices for critically ill patients and their families in a peri-intensive care setting: A protocol for an umbrella review

“…Before writing this protocol, a scoping search of the literature on systematic reviews in ICU palliative and end-of-life care was conducted. It showed that there are published systematic reviews related to types of ICUs like burns (Ribeiro et al 2023), surgical and trauma (Newsome et al 2023), cardiac (Kim et al 2022, neonatal (Abuhammad et al 2023;Kim et al 2019), pediatric (Bennett andLeBaron 2019;Howes 2015;Short andThienprayoon 2018), geriatric (Da Fonseca et al 2012;Roczen et al 2016), and cancer (Martins et al 2017). Furthermore, there were systematic reviews related to the palliative care process in ICUs that include the consults (Grabda and Lim 2021), family meetings (Singer et al 2016), eliciting preferences (Alyami et al 2019), decision-making (Johal et al 2022Oczkowski et al 2016;Spoljar et al 2020;Visser et al 2014), and communication (Schram et al 2017;Zante and Schefold 2019).…”

Variation in Pediatric Palliative Care Allocation Among Critically Ill Children in the United States*

“…Additionally, some pediatric providers may be reluctant to consult PC due to fears of increasing emotional burden and diminishing parental hopes (51). However, studies support the value of the PC team as part of an interprofessional approach to the care of critically ill patients (1, 3, 52, 53). PC in the adult population with serious illness demonstrates efficacy with regard to quality of life, hospital LOS, ICU LOS, lower costs, and mortality (54, 55).…”

“…Further refinement of PC-ICU criteria and application could help standardize triggering of PC consultation and aid in optimization of timing and appropriateness across institutions. Most importantly, it is imperative that we better characterize the nature of PC involvement (timing, quantity, and quality) and further assess the impact of pediatric PC consultation, which may support equity in access to this important healthcare resource (53, 61).…”

Research Priorities for U.K. Pediatric Critical Care in 2019: Healthcare Professionals’ and Parents’ Perspectives

“…Interestingly, the parent group scored the topic of decision-making around end of life for children admitted to PICU as the highest priority area for research (ranked sixth by HCPs). In both the United States and the United Kingdom, the most common location of pediatric death is the PICU (23,24). Many of these deaths involve withdrawal of one or more forms of life-sustaining medical treatment; therefore, discussions around end-of-life care and decision-making are clearly important both for families as well as for HCP.…”