Commentary by Emily Johnston MD, MS
Feature Article: Widger, K., Wolfe, J., Friedrichsdorf, S., Pole, J. D., Brennenstuhl, S., Liben, S., Greenberg, M., Bouffet, E., Siden, H., Husain, A., Whitlock, J. A., Leyden, M., & Rapoport, A. (2018). National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care. Journal of Palliative Medicine, 21(9), 1249–1256.
Other Articles Referenced: Richards, C. A., Starks, H., O’Connor, M. R., Bourget, E., Lindhorst, T., Hays, R., & Doorenbos, A. Z. (2018). When and Why Do Neonatal and Pediatric Critical Care Physicians Consult Palliative Care? Am J Hosp Palliat Care, 35(6), 840–846.
Feudnter, C, Womer J, Augustin R, Remke, S, Wolfe, J, Friebert S, Weissman D. (2013). Pediatric Palliative Care Programs in Children’s Hospitals: a Cross-Sectional National Survey. Pediatrics, 132 (6), 1063-1070
There is both a growing number of children with complex chronic conditions and a call for a palliative approach to children with life threatening illnesses, including children with complex chronic conditions. However, there is a shortage of specialty pediatric palliative care physicians. In 2012, only 69% of children’s hospitals had a pediatric palliative care program with tremendous variation in staffing and services offered. Therefore, strategic use of specialized pediatric palliative care resources is required as is better delineation of primary versus specialty palliative care and continued advocacy to increase the specialty pediatric palliative care workforce.
Widger’s article discusses one method to improve primary palliative care access to children with cancer: through the Education in Palliative and End-of-Life Care for Pediatrics (EPEC-Pediatrics) train the trainer model. They impressively trained 72 trainers that educated 3745 local pediatric oncology learners about pediatric palliative care principles in Canada. Almost all the learners (97%) reported an increase in pediatric palliative care knowledge and that the information would benefit their practice (96%). After the intervention, patients had earlier palliative care consults and earlier initiation of advanced care planning. However, there were no changes in patients’ quality of life or symptoms after the intervention.
This EPEC train the trainer model significantly increased primary pediatric palliative care knowledge, potentially increasing the access to a palliative approach to care for children with cancer. However, it is ironic that improved primary palliative care training actually led to earlier specialty palliative care consults – potentially increasing the demand for the limited resource of specialty pediatric palliative care. This raises an important question: What are meaningful outcomes in pediatric palliative care studies – knowledge of providers, access to specialty pediatric palliative care, improved quality of life, improved bereaved family outcomes? Are an increase in provider knowledge and earlier advanced care planning and specialty palliative care consults sufficiently positive outcomes to justify expanding this model?
Delineating meaningful outcomes in pediatric palliative care studies is increasingly important as a growing number of pediatric specialist recognize the importance of specialty pediatric palliative care. Richards’ interviews with 22 pediatric intensivists highlights the reasons pediatric intensivists consult specialty pediatric palliative care. These include communication help, particularly when intensivists do not have the time for prolonged goals of care conversations given the high priority and demand of acute events in the intensive care unit. Therefore, Richards suggests a checklist to ensure that families are getting their palliative care needs met with a triggered consult when the primary team is unable to meet those needs. Ensuring that children admitted to intensive care units are getting their palliative care needs met is critically important. We need to consider what are the best models to guarantee such care. Would an EPEC-pediatrics train the trainer model for pediatric intensivists increase their primary palliative care skills and allow them to meet more of the palliative care needs of their patients? Is a triggered specialty pediatric palliative care consult the best method?
Clearly, further studies and conversations between specialists trying to meet the palliative care needs of their patients, families, pediatric palliative care specialists, and other stake-holders are needed. As interventions are designed and studied, careful attention needs to be played to the desired outcomes. In the ideal world perhaps specialty palliative care would be involved from the time of diagnosis for any child with a life-threatening condition, but we do not yet have the data to know if that is the best care model nor the specialty pediatric palliative care workforce to make that a reality. Meanwhile, we can continue to better understand when specialty palliative care is most appropriate and better ways integrate primary palliative care into practice, which both of these articles help us do.