Trends in Palliative Care Research 2022; Issue #03

Commentary by:

Dr. Phanice Okara, Neonatal-Perinatal Medicine Clinical Fellow, UBC, Canada

Feature Article:

Turner, S., Littlemore, J., Taylor, J., Parr, E., & Topping, A. E. (2022). Metaphors that shape parents’ perceptions of effective communication with healthcare practitioners following child death: A qualitative UK study. BMJ Open, 12(1), e054991.

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I chose this article because it gives insight into the perspective of a grieving parent and what would be effective communication and behaviour in their child’s peri-death experience. As healthcare practitioners, we should strive to do no harm and ease the pain of our patients and in the Pediatric Population that includes families. This article is a window into how we communicate with our patients and what they take out of our words in their most difficult time. The loss of a loved one is difficult; parents have the unthinkable ordeal of dealing with the loss of their child. Parents’ perception of effective communication with healthcare practitioners is an important part of Family-centred care in the NICU, PICU and Pediatric Palliative Care.

This study demonstrates the effect of communication with a parent during the grieving period, even though some parents had hazy memories of the peri-death experience, they recalled what was said to them and how they were made to feel. Their identity as parents during this difficult time persists, their emotional and physical responses are varied and their perspective on time is skewed which is important for healthcare practitioners to recognize and learn to respond to effectively in a sensitive manner. HCPs need to recognize effect of death on the parents and their ability to receive information, follow instructions and the benefit of written documents that they can use later.

It is important to explore the best approach to End-of-life care before, during and after the death of a child. This is a difficult topic to broach, and the management of emotions is one a lot of junior health care practitioners are not experienced in dealing with early in their practice. Simulations and more structured conversations based on research would guide young practitioners on how to approach the subject and offer individualized appropriate support to the whole family. Research on this topic is important and crucial in Family-centred and integrated care in Pediatrics.

In my experience, healthcare practitioners bring their own biases, experiences and emotional reactions to the conversation and responses to the families’ experience. They lose the objectivity, individualized perspective and focus on management and care offered to a family that is dealing with death.

I’ll be completing my Neonatal Fellowship in a few months; End-of-Life care is something that I have had to deal with while in the NICU and on Neonatal Transport and the common thread is effective communication with distressed parents. I would like to improve my communication with parents during difficult moments. Integration of the understanding of what parents found useful from their communication with healthcare practitioners is important in establishing Family-centred care in the NICU. More research on effective communication and structured pathways and settings on dealing with pediatric deaths and their families is needed if healthcare practitioners are to improve family-centred care in the NICU.