Sonia Brar, MD, Pediatric Palliative Care Fellow- Canuck Place Children’s Hospice, Canada – Dr. Brar is a Royal College Medical Fellow working towards her subspecialty accreditation in PPC. Over the next two years she will work alongside Canuck Place’s clinical team, learning and specializing in Pediatric Palliative Care. Once her training is complete she will begin her career as one of the new generation of Pediatric Palliative Physicians.
Prins, S., Linn, A. J., van Kaam, A. H. L. C., van de Loo, M., van Woensel, J. B. M., van Heerde, M., Dijk, P. H., Kneyber, M. C. J., de Hoog, M., Simons, S. H. P., Akkermans, A. A., Smets, E. M. A., & de Vos, M. A. (2023). Diversity of Parent Emotions and Physician Responses During End-of-Life Conversations. Pediatrics, 152(3).
This study was focused on analyzing the nature of conversations between parents and physicians during end-of-life decision-making for critically ill children. Conducted in neonatal and pediatric intensive care units across three Dutch university medical centers, the study involved 49 audio-recorded conversations. The research was part of a larger project examining end-of-life communication in intensive care units (ICUs).
The study employed a qualitative inductive approach to code and analyze the data. It identified a wide range of emotions expressed by parents which included anxiety, anger, devotion, grief, relief, hope, and guilt. Anxiety was by and large, the most prevalent emotion and often expressed implicitly. The study also examined how physicians responded to these emotions, finding that they primarily used cognition-oriented approaches which often limited the emotional space for parents and intensified their expressions of anger and protectiveness.
The conversations were categorized into initial, middle, and last phases of illness and decision-making. Parents’ expressions of anxiety and devotion were prevalent throughout these phases, while anger was more common in the initial and middle phases. The study concluded that physicians need more training to recognize and adequately respond to parents’ emotions, particularly implicit expressions of anxiety.
In reflecting on this study, the finding that was most surprising for me was that giving parents silence and space sometimes exacerbated their anxiety or anger, rather than alleviating it. This is explained by the researchers that this may be due to physicians expressing their reassurance or acknowledgement “too briefly or prematurely and without really listening to parents’ perspectives” or rather due to the physicians showing an inauthenticity of emotion. Physicians might be providing space in such cases because they’ve been trained to do so, but they may not be genuinely engaged with the parents’ concerns. This can leave families feeling as if they’re being managed through a preplanned algorithmic approach rather than being genuinely acknowledged.
It is a difficult balance when you are working in an intensive care field such as the providers in this study of how to maintain that authentic approach for each patient, each family and each interaction and it is a skill that is not prioritized historically in medical training. I do wonder how well one can ensure that providers engage emotionally or authentically with each interaction. However, there is a space to use the findings of this study to design a curriculum or modules aimed at allowing providers to practice responding to implicit and explicit emotions with feedback perhaps through the use of parent partners that can help providers learn to not only follow an algorithm but respond to the human in front of them with the same nuance as they respond to a critically ill body.