An interview with Eric Bouffet, MD, FRCPC and Ceilidh Eaton Russell, PhD(c), CCLS
A Swedish study published in 2004 looked at 429 parents who had lost a child to cancer and asked the questions: Did you talk to your child about the fact that they were going to die? If so, or if not, do you regret your decision? Although only 147 parents had that difficult conversation with their child, none of them regretted it, while 27% of parents who did not talk with their child about death regretted not doing so.
In 2018, POGO issued a seed grant to principal investigator Dr. Eric Bouffet and co-investigators Ceilidh Eaton Russell and Dr. Adam Rapoport to interview parents and children in order to learn how they talk together about the child’s illness, its impacts on their lives, their feelings and worries, including their feelings about dying if the child’s prognosis is not good.
POGO: What have you seen in your interactions with families who are dealing with a critically ill child?
Dr. Bouffet: What we see in our clinical practice is that while some parents are very open about talking to their child who has cancer, others don’t even want to use that word and they will tell the oncology team, “Don’t tell my child they have cancer.” At the same time, often the child knows and they will say to the child life specialist, or even the therapeutic clown, “I have cancer” or “I know I am going to die,” followed by “don’t tell my parents that I know.” Some children will even talk about when they will get their driver’s license or when they will get married. They are imagining a future they know they might never have, but also, they are trying to comfort their parents. Each party is trying to protect the other, so there is this mutual pretense.
Ms. Eaton Russell: Many parents who are able to talk openly with their child about their cancer diagnosis—even when the prognosis isn’t good and the child is aware they are going to die—often glow when they recount the conversations. They say that the time they spent together was meaningful and that they were able to offer some peace to their ill or dying child. At the other end of the spectrum, there are many families who cannot manage these tough conversations around end of life, and for some of them, when I see them months or even years after their child has died, the angst is palpable.
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POGO: Your study interviews parents and children. How do you get children to open up about what is happening to them when they might not have the words?
Ms. Eaton Russell: We have this activity book with beautiful illustrations to help kids communicate. They can demonstrate how they feel about what is happening to them or they can tell the story as though it is happening to someone else so it does not feel as threatening. It is very informative for both us and for the children.
POGO: What does this funding mean for your clinical practice? What are you hoping to accomplish with this research?
Dr. Bouffet: It is about quality of life—today, but also for the future of this family and how they will feel when they reflect about the time they spent with their child at what is probably the most intense period of their lives.
Ms. Eaton Russell: I hope we can develop some strategies to help families who are struggling with this topic begin to talk openly with their critically ill child, regardless of the child’s prognosis. It would be great to develop some tools to train frontline staff to encourage families to have these difficult conversations. Potential future research could be piloting workshops for families or piloting a clinical role to work directly with the oncology team and the family to focus on supporting open communication between parents and their sick or dying child.
Dr. Bouffet: Research, particularly in a university or hospital setting, is typically labs, equipment and people who are making fabulous discoveries, but there are also very important needs for the psychosocial aspects of illness. Not all funding agencies are supportive of qualitative research, so this POGO seed grant is fantastic because even if it’s not going to “save lives,” it has the potential to make significant change in the quality of life of the families and patients we treat. I am very grateful to POGO for supporting this type of research; it can have a big impact on our practice.
POGO: What kind of impact has it had on you personally?
Ms. Eaton Russell: Childhood cancer treatment, especially when end of life is a reality, can be such an intimate time and an opportunity for meaningful connections. It is a real privilege to learn from families and to be able to share what I’ve learned to help other families make the most of the time they have together in a different way than they might have otherwise.
Dr. Bouffet: The results of this research can give healthcare providers more confidence when we speak to patients and families about their critically ill child, and so it must be shared. We often “do not have the guts” to tell the truth, but we have learned through our interviews that it is critical for children to be able to talk to someone and share their thoughts and fears. It is also critical for parents to be informed. Much of this knowledge is new and can change our practice.
Dr. Eric Bouffet is a professor of paediatrics at the University of Toronto, Garron Family Chair in Childhood Cancer Research and Head of the Neuro-oncology Section in the Division of Haematology/Oncology at SickKids in Toronto.
Ceilidh Eaton Russell is a researcher trained as a chid life specialist at SickKids and is Director of Research and Evaluation at the Dr. Jay Children’s Grief Centre.