There is no easy way to discuss the death and dying of a parent with children. Dr. Janel Walsh chose this topic as the subject of her research project both because of an identified need in the literature and an awareness that her colleagues struggled with it as well. Her own experience early on in her palliative care residency program at McGill University also served as inspiration.
“I had a patient who was a young mother and who was dying on the palliative care unit and I remember her husband had asked me for advice on what to do with his children at that point in time because she was actively dying. Despite the fact that I knew a little bit about what was in the literature, I wasn’t able to help him as much as I wanted. I think that experience really stayed with me and motivated me throughout this project.”
The purpose of Dr. Walsh’s Quality Improvement research project was twofold. First, she searched the literature about the communication of parental death and dying with children. Second, she created a pamphlet to help healthcare professionals feel more confident addressing this difficult topic with children.
The literature shows that the disclosure of parental illness helps to reduce anxiety in children and improves parent-child relationships. Dr. Walsh found that according to the research, children want to know and ultimately, they benefit from knowing the truth because it reduces their anxiety.
“The main thing that came up in the papers was the question of to disclose or not to disclose and the literature was quite homogenous. Disclosure to children is encouraged. Disclosure seems to decrease children’s anxiety because children are very observant and sensitive to change in their environment and they have very active imaginations so you can understand that when they feel that there is something happening but they are not being told they could be making up stories and envisioning worse case scenarios. All of that points to encouraging parents to tell children the truth.”
Despite the literature that supports disclosure of the seriousness of the parent’s illness, the reality is that there is significant discomfort broaching this topic as well as a number of barriers that make these conversations difficult with children. One barrier on the part of healthcare professionals and parents is the desire to protect children and prevent emotional pain. Children also demonstrate protective behavior toward their parents as well. They often do not ask questions to avoid making their parents sad.
“The second big point was the barriers to disclosure. Why aren’t we having these discussions? I’d say it’s mostly the healthcare providers and parents trying to protect children. On the healthcare providers side, there is also a feeling of lack of time and lack of training to address these kinds of conversations hence the tool and maybe this project will spark interest in the training part. For parents it was usually protective behavior towards the children, so not wanting to harm them. Even on the children’s side, there was a study that showed that children tended to not ask their parents questions that they might have for fear of making them sad. So it seems the protective behavior goes both ways.”
Based on the findings in the literature as well as input from palliative care experts (two pediatric palliative care physicians as well as a grief counsellor with many years of experience working with children), Dr. Walsh created a tool to help healthcare providers and parents speak with children about parental death and dying.
This tool contains both general advice (eg, language to avoid), links to resources such as kidsgrief.ca [link: https://kidsgrief.ca/] as well as specific information and examples geared to different age groups based on neurobiological development (i.e., age 0-2, 2-5, 6-8, 9-11). Dr. Walsh notes that the tool may not be generalizable to different cultures as the literature was largely based on the experiences of Anglo-Saxon/European populations. To access this tool: please go to https://www.mcgill.ca/palliativecare/files/palliativecare/discussing_parental_death_and_dying_with_children_dpddc_tool_2.pdf
After completion of her palliative care residency this summer, Dr. Walsh will be working in Montreal at St. Mary’s Hospital Center and the McGill University Health Centre (MUHC).
For more information on Dr. Janel Walsh’s research project, Communication About Parental Death and Dying with Children in Primary Care: A Quality Improvement Project, please contact:
devon.phillips [at] mcgill.ca
For more information on the Palliative Care Residency Program at McGill University: https://www.mcgill.ca/familymed/education/postgrad/enhancedskillsprograms/pc