When Support Matters Most: Considering the Five Ws for Specialized Pediatric Palliative Care in the PICU

Collaboration between pediatric palliative care (PPC) and pediatric critical care teams is essential for providing high-quality complex care for critically ill children and their families. Literature also emphasizes the importance of pediatric intensivists developing primary PPC skills to integrate palliative care principles into daily critical care practice (1,2). Although acquisition of primary PPC skills is necessary, it should not minimize the recognition and partnership of those with specialized PPC (SPPC) training, frequently referred to as “tertiary” PPC (3,4). SPPC offers longitudinal care for complex critically ill patients beyond the walls of the PICU (3,4). In this issue of Pediatric Critical Care Medicine, Gouda et al (5) investigate SPPC consultation in children who suffered an out-of-hospital cardiac arrest (OHCA). After looking at a single-center study where 28.8% (34/283) of children with OHCA received SPPC consultation, Gouda et al (5,6) now use the Pediatric Health Information Systems (PHIS) database to perform a retrospective chart review of all children younger than 21 years old with an OHCA from 2013 to 2023. The authors found that approximately 13% (198/1530) of children with OHCA received SPPC consultation, roughly 1-in-7 to 1-in-8 (5). Further, the study found that those with SPPC consultation were more likely to have complex care conditions, a lower Children’s Opportunity Index (COI), increased hospital length of stay, and increased mechanical dependence (5). Overall, SPPC consultation rates grew during the study time, but 77% (36/47) of institutions had consultation rates less than 20% (5). Given their findings and the high mortality rate for children with OHCA (68%, 1045/1530), the authors emphasize the need for early SPPC involvement for critically ill children in the PICU. The study highlights historical and still highly relevant predicaments as to “when” pediatric intensivists should consult SPPC colleagues. When is the “right time” for SPPC? Should we “always” consult for patients with OHCA? What do we do if we don’t have SPPC available at our institution? To explore these questions further, we can consider the five Ws: Where, Who, What, When, and Why as they pertain to SPPC. Ideally, SPCC consultation would be readily available nationally; however, notable regional variability exists (5,7–10), regarding accessibility and structure itself (8). The authors’ findings are consistent with other studies in that there is no difference in SPPC consultations in rural vs. non-rural settings (5,10). This raises the question of how limited SPPC resources should be prioritized to cultivate and sustain programs effectively. During the study time frame, literature shows an initial increase in program establishment (8) with a relative stagnation in subsequent years (7). Evaluated last in 2022 (7), today it is unclear how many SPPC programs exist or how a “program” is defined, as there is a difference in interpretation of SPPC scope, staffing, and function (8,11). Efforts to delineate essential components of an SPPC team (8) deserve ongoing attention. Barriers to SPPC program development include institutional constraints (e.g., financial limitations), lack of pediatric-specific palliative care training, and cultural acceptance (9,11,12). Until we can further delineate “where” the SPPC landscape exists and in what forms, it is difficult to universally guide intensivists on how to foster collaboration with SPPC colleagues. The authors found that children with complex care needs who had an OHCA received more SPPC consultations than children without complex needs (5). This study reflects similarities in other published literature showing that children with complex care needs are frequently supported by SPPC to aid in decision-making, advanced care planning, and symptom management (4,13,14). In this study, it is not known if patients with OHCA had established SPPC before inpatient involvement; longevity and continuity are important and understated aspects SPPC provides (5). The authors also acknowledge that SPCC “trigger” consults differ between institutions and can vary from diagnosis (i.e., complex congenital heart disease) to complexity (i.e., need for mechanical ventilation). Outside of the “trigger,” provider implicit bias toward SPPC and patients may alter consultation rates; it remains unclear as to which patients and populations should be seen by SPPC. Regardless, collaboration between SPCC and critical care teams can aid in ongoing patient identification for whom SPPC should be considered in light of patient complexity, needs, and available resources. With the expectation that critical care physicians should acquire primary PPC skills, it is uncertain as to “what” these skills entail and “what” can be expected from SPPC. Notably, SPPC can aid care coordination between inpatient and outpatient teams and offer longitudinal bereavement and spiritual support, as well as guidance in navigating new technologies and symptoms at home. Unique to SPPC teams, the core team may be comprised of physicians, nurse practitioners, nurses, chaplains, social workers, child-life specialists, and care coordinators. The authors accounted for International Classification of Diseases, Ninth Revision and Tenth Revision coded encounters, but this likely under-represents interdisciplinary SPPC touchpoints. Further, the frequency with which the SPPC team evaluated the patient and supported the team could not be defined from the PHIS database (5). Intensivists should familiarize themselves with SPPC resources within their own institutions and have a clear understanding of what the multidisciplinary team in the ICU can accomplish and what can and should be considered for specialized, consultant care. If you ask 10 critical care physicians “when” the “right time” is to consult SPPC, most will have different answers. The authors suggest that all patients with OHCA could benefit from “early” consultation for SPPC; however, this is easier said than done. How do you define “early?” Although some institutions implement “trigger” consults and have tried screening tools (15) for SPPC, does the consult note merely fill a requirement? Being proactive in SPPC consultation is a part of comprehensive care planning for a critically ill child and should be the standard of care. But more needs to be understood about the barriers to consultation and timing of SPPC in the PICU. Lastly, we must consider “why” it’s important for critical care teams to collaborate with SPPC. The study (5) found that children with lower COIs and those who are in the Midwest and West had more frequent SPPC consultations. The authors thoughtfully reflect that implicit bias may affect SPPC consultation: either the act of critical care consulting a specialist or the acceptance of the consultation on behalf of the SPPC team. Personal bias and social determinants of health should not affect access to SPPC. All patients deserve to receive high-quality, patient-focused, goal-concordant, and trauma-informed care. We thank Gouda et al (5) for encouraging us through their important study to reflect on the five “Ws” surrounding the recognition, access, and utilization of SPPC consultation for critically ill children. It is concerning that we are unable to clearly answer crucial questions pertaining to SPPC about “where” resources are available, “who” should receive SPPC, “when,” “what” constitutes primary vs. SPPC, and “why.” In the future, it is imperative to explore these areas to ensure that we are providing the highest quality care to all patients. We need to further evaluate barriers to consultation in the PICU, the effectiveness of SPPC triggers, and the bias we hold as clinicians. Gouda et al (5) wrote a thought-provoking article, and now we are left with more questions than answers.