In March 2017, Ms. Coleman’s daughter Justice Hope, who was medically complex and had multiple disabilities, died at age 11. She was the sunshine in the lives of many and communicated using a thousand smiles.
Blog: Family Connections with Pediatrics
In the last year of our daughter’s life, there were many conversations. Some good, some not so good. Emotions were raw and present for all. Discussing the death of a child is of course by its very nature difficult. How does one find words to talk about what many simply refer to as “indescribable” or “unimaginable”? Those words alone are conversation stoppers. Many times, it felt like my husband and I were in a dance with different members of the care team, circling each other- not seeing or hearing, tiptoeing around and not connecting.
Thankfully, my husband and I were able to talk to each other a lot about what was most important for our sweet girl. One thing we agreed on is that we did not want to dance around this topic.
However, opening a line of communication with the care team was not easy, nor was it always well-received. Some heard our concerns, felt relief with the opening, and we moved forward together. But others dismissed us in many ways. One care team member said to us, “She is fine. You need psychiatric help.” In this particular instance, the conversation stopped entirely. Most importantly, we no longer had trust.
In this month’s Pediatrics, in an article entitled, “Diversity of Parent Emotions and Physician Responses During End-of-Life Conversations,” a group of authors from the Netherlands explore the many layers of emotions, how these emotions are expressed, the types of responses to these emotions, and the effect on moving parents and physicians from a dance to meaningful end-of-life conversation (10.1542/peds.2022-061050).
How did the authors study this?
Instead of interviewing families and providers about what they remembered, the authors of this study recorded end-of-life conversations in real time so they could:
- Capture which emotions parents express verbally and in non-verbal vocalizations during conversations about the (dis)continuation of their child’s life sustaining treatment, and how parents express these emotions
- Explore how providers respond to these emotions
- Look at which emotions parents express throughout such conversations following care team responses
What did the study find?
Just as human emotions and responses are complex, findings studying them are also very layered. I cannot share all of the many findings, and I encourage you to read the article to learn more.
However, here are some of the findings that focus only on the emotion of anxiety.
- All of the conversations included implicit (not directly stated or shared) expressions of anxiety
- When physicians responded to implicit anxiety by exploring how the parents were feeling and asking questions about what they had expressed, this helped parents to clearly share their anxiety
- Physician responses that were only cognition-oriented, like defending a statement or rephrasing what a parent said, limited parent opportunity to share
- When parents could not fully share their anxiety, that emotion remained, and other emotions, such as anger or protectiveness came out and masked the anxiety underneath
- Some physicians found it hard to understand how to respond to the diverse expression of emotion or uncover the anxiety, so they turned back to sharing medical information
The authors noted in the limitations that their study reached many conclusions but should be viewed only as a first step.
What can you do with this article?
- Although this article is focused on end-of-life conversations, the role of emotions and responses play out in so many other healthcare conversations. Consider reading it even if your child is not seriously ill.
- Use the article as a way to start a difficult or end-of-life conversation. Share it with your child’s doctor or other care team members and tell them you want to talk about things but aren’t sure how.
- If this article sends you in search of more help with starting conversations, take a look at these 2 resources:
- The Conversation Project has tools to help start conversations with your child’s doctor as well as your child with a serious illness
- Courageous Parents Network has tools for families and providers