Dr. Veronica Indicatti Fiamenghi, MD, Ms, Pediatric Intensive Care Fellow, BCCH Vancouver
Delgado-Corcoran, C., Wawrzynski, S. E., Mansfield, K. J., Flaherty, B., DeCourcey, D. D., Moore, D., Cook, L. J., Ullrich, C. K., & Olson, L. M. (2022). An Automatic Pediatric Palliative Care Consultation for Children Supported on Extracorporeal Membrane Oxygenation: A Survey of Perceived Benefits and Barriers. Journal of Palliative Medicine., 18.
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In 2021, there were almost 80,000 Extracorporeal Membrane of Oxygenation (ECMO) runs globally to support pediatric or neonatal patients with life-threatening diseases compromising the cardiovascular and/or the respiratory system (ELSO Registry Report, April 2022). In almost every situation, this technologic therapy works as a “bridge” to recovery or to organ transplant, which means that the prognosis is usually uncertain. 2021 data shows that the overall rate of survival to discharge in this patient group ranges from 42 to 73%, influenced by the modality of the support. In this context, an extremely complex clinical situation characterized by high mortality rates, the possibility of prolonged hospitalization and prognostic uncertainty highlights the need for Pediatric Palliative Care (PPC) involvement. What views does the healthcare team involved in these patients’ care have on an automatic PPC consultation to facilitate this process? Delgado-Corcoran et al. (2022) attempt to answer this question in their article.
The researchers performed a cross-sectional survey with the healthcare team members caring for children on ECMO support. This included medical attendings, fellows and nursing staff from the intensive care unit (ICU), cardiology and cardiac surgery. They aimed to assess participants’ perceptions of potential benefits and difficulties of an automatic PPC consultation in this setting. If the involvement of PPC services is not as consistent or early as expected to be of benefit to this patient group, it is essential to understand the perceptions involved in this choice.
The most commonly selected barrier to PPC involvement found in this study is that it will be “perceived by families as giving up”. This finding does not surprise me. Having had the opportunity to work and learn in different ICU settings and their varying cultural, economic and resources perspectives, I believe that there is a common point when we talk about the involvement of PPC services and goals of care. A consensus among team members is most easily achieved when we are dealing with patients with chronic conditions, compared to when we face acute situations. As critical care providers, our training is focused on the skills needed to keep a patient alive in acute situations. However, the scope of practice of PPC involves significantly more than end-of-life discussions. An early involvement in situations as acute as the ones with ECMO support has the potential to improve symptom management, advanced care planning and communication with the family regarding such uncertain trajectory.
During my current fellowship, I had the privilege to focus part of my critical care training on PPC. For one month, I had the chance to be on the other side, where I was involved in multiple discussions regarding critically ill patients from the perspective of palliative care consulting instead of ICU referral. This experience reinforced my thoughts on the benefits of PPC involvement, many of them highlighted by the participants in this study. Beyond end-of-life discussions, PPC helps in assisting families with decision-making and in improving the team’s understanding of the patient and family’s goals of care – points that are crucial when we are dealing with acute life-threatening situations. Besides ECLS, some other acute situations may trigger automatic a PPC consult. For example, patients and families with a life-threatening antenatal diagnosis (including complex congenital heart diseases) who are going through bone marrow transplants are monitored by a PPC team at the hospital where I am currently doing my training.
This study brings important points for reflection when considering automatic PPC consultation for acutely ill children, such as those supported by ECMO. While this service may not be widely available or have the capacity to embrace a significant increase in the number of consults, an automatic referral may help overcome stigma, and as the final and most important benefit, improve the support we provide to the families facing such critical situations with their children.