Benchmarking Pediatric Palliative Care Delivery Free

Twenty years ago, the Institute of Medicine (IOM) issued the seminal report When Children Die: Improving Palliative and End of Life Care for Children and Their Families. In the final chapter of the report, the IOM noted:

Since then, pediatric palliative care (PPC) investigators have advanced research regarding shared decision-making with caregivers, end-of-life symptom burden, and barriers to accessing PPC services.^2–9  In spite of this progress, however, research to delineate the “organizational processes and structures” needed to ensure all children have access to high-quality PPC remains relatively scant.^10,11 

In this month’s Hospital Pediatrics, Postier and colleagues share results from their multicenter, cross-sectional analysis of data from >1400 PPC encounters in the Pediatric Palliative Care Quality Network (PedPCQN).¹²  Their findings provide greater insight into reasons for PPC consultation, the substantial burden of palliative care needs children and families experience, and the impact of PPC consultation on ameliorating symptoms. As such, this work reinforces both the need for PPC consultation and its impact on the care of children with life-limiting conditions (LLCs) and their families. Simultaneously, the authors spotlight how PPC teams attempt to meet these needs, implicitly highlighting the ongoing knowledge gaps regarding optimal team structure, intervention, and engagement.

Postier and colleagues found that referring providers frequently identified several reasons for consulting PPC teams.¹²  Moreover, after screening during the consultation process, PPC teams identified multiple unmet needs, regardless of whether these reasons were included in the initial referral criteria. These needs included psychosocial support, defining goals of care, and symptom management. Yet, despite these multidimensional needs, fewer than one-half of all consultations were attended by >2 members of the interdisciplinary team (IDT), which as the authors point out, falls far short of national and international guidelines.^13,14 

These discrepancies exemplify the staffing shortages most PPC programs face.^7,8  Data from the 2018 National Palliative Care Registry revealed that the majority of PPC programs in the United States were unable to meet patient care needs with their current program staffing.⁷  Moreover, the prevalence of PPC physicians lags far behind that of other subspecialists. Turner and colleagues demonstrated that the ratio of PPC physicians to 100 000 children was 0.3, which was considerably lower than that of other subspecialists who commonly care for children with LLCs, including neonatology (5.57), cardiology (2.54), critical care medicine (2.43), and hematology-oncology (2.17).¹⁵  Literature regarding nonphysician PPC team members is comparatively scarce, but available data suggest there are similar shortages of qualified nonphysician PPC team members.¹⁶ 

What this study cannot address and remains at large for the PPC research field, is answers to delineate the “organizational processes and structure” sought by the IOM in When Children Die. First, to evaluate this question, further information is needed regarding PPC interventions and the subsequent outcomes for children and families. For example, results from this study revealed improvements in certain symptoms and that interventions for other PPC issues (eg, defining goals of care and addressing psychosocial concerns) were provided after PPC consultation.¹²  But the nature of these interventions and the responses to these treatments were not captured in this study because of limitations of the PedPCQN database structure. Without these data, it is difficult to create practice standards for care delivery.

Second, additional data are needed regarding the systems in which PPC teams operate and how those systems impact palliative care delivery. For example, Postier revealed there were 824 encounters that screened positive for spiritual care needs, but PPC chaplains were only present at 677 encounters. Despite this, 747 children received spiritual care interventions,¹²  suggesting that spiritual care for children with LLCs is provided by chaplains outside of the IDT at some institutions. Unfortunately, researchers cannot evaluate or compare different methods of care delivery without additional information regarding care provided by non-PPC clinicians.

Third, to create standards around PPC consultation and team structures, further information is needed regarding the care delivered by the IDT. The data presented by Postier and colleagues included information regarding the number of PPC team members who were present and the proportion of PPC team members who attended consultations.¹²  However, the exact composition of the team that was present at the time of consultation remains unknown. Without a thorough understanding of how to align IDT members’ skill sets with the unique needs of each child and family, optimizing care delivery will remain challenging, particularly while PPC staffing shortages persist.

Finally, thoroughly evaluating the quality of PPC care may require the refinement of commonly used PPC measures. For example, the most frequent referral reason was “support for the patient and family,” including addressing educational needs, advocacy, and support. Although previous investigators have used this metric,¹⁷  it is so broad that determining which IDT members should have been present is nearly impossible. Even traditional descriptions of physical symptoms may not suffice. For example, by definition, pain has physical, psychological, and emotional components.¹⁸  If analgesic medications are needed, a prescribing provider (ie, a physician or advanced practice provider) should attend the consultation. However, if psychological or spiritual distress is contributing to a child’s pain, the provision of high-quality PPC would require the presence of a mental health provider or chaplain. Without a more granular understanding of the needs of children with LLCs and their families, the gap regarding how to deliver high-quality PPC that the IOM identified 20 years ago is likely to remain.

Results from previous studies suggest that a number of encounters were likely missed in the PedPCQN database because of the voluntary nature of the reporting.⁷  Given the staffing limitations affecting most PPC programs, the fact that the investigators captured as many encounters as they did is, in some ways, remarkable. One of the primary barriers to evaluating the effectiveness of PPC processes and care delivery is that such monitoring efforts are less likely to occur without institutional support, particularly at smaller programs outside of major academic institutions.¹⁹  PPC programs rely heavily on hospital funding and often lack the financial support and personnel needed to sustain such processes.⁶  Moreover, unlike other pediatric benchmarks (eg, time to antibiotics in sepsis), the data needed to evaluate the PPC quality (eg, goal concordance, non-pain symptom management) cannot easily be extracted from the electronic medical record. The data that can be obtained through the electronic medical record, such as survival to discharge, may also have less meaning for children with LLCs compared with adults because the overwhelming majority of children survive for at least 1 year after their initial PPC consultation.²⁰  Therefore, prospective, longitudinal data collection is likely needed to evaluate the processes of care delivery and the quality of PPC interventions.

Ironically, without such benchmarking data, PPC programs may be hard-pressed to argue for further institutional support because they cannot prove that they are not meeting care standards. Although national data suggest that PPC programs may no longer be sustainable,⁷  obtaining institutional funding for personnel often requires demonstrating local need. Thus, PPC programs may find themselves in a paradox in which they lack the personnel to deliver optimal care and the support needed to accrue data to prove this deficiency.

As the number of children eligible for palliative care grows, so too does the need to ensure access to palliative care and evaluate care delivery. This study reveals how PPC researchers and clinicians are taking steps to understand the processes needed to meet these goals. Therefore, ongoing clinical and advocacy partnerships with inpatient subspecialists, including pediatric hospitalists, are necessary to better understand the impact of PPC on shared metrics, such as patient satisfaction, symptom management, length of stay, readmission rates, and delivery of value-based care to children with LLCs. These efforts are crucial to ensuring access to equitable, high-quality care for the most vulnerable children and families.