A CHILD INFORMED
How to have honest communication when a child receives a cancer diagnosis,
I will never forget the first time I told a parent that their child has cancer. Fresh out of medical school, I was working in the emergency department when the laboratory called because leukemia cells were found in my patient’s blood. As a junior trainee, I was stunned and felt overwhelmed by the seemingly impossible task at hand. The physician supervising me mentored and supported me through the emotional conversation with the child’s parent that followed. Little did I know this experience would be foundational for my future career.
As a pediatric cancer specialist, breaking bad news to children and families is unfortunately something I have experience with. Thankfully, childhood cancer is rare, and today, nearly 85 per cent of children with cancer survive. Improved diagnosis, treatments and outcomes are the result of incredible advances in research and medicine.
Although survival rates have dramatically improved, disclosing a new diagnosis of pediatric cancer to a child and their family remains one of the most difficult parts of my job.
Children receive information in different ways, depending on many factors, including but not limited to their age, developmental stage, family dynamics and emotional or mental state. Here are some tips that I have found helpful when communicating with children in the setting of bad news: Be honest with the child and don’t make promises you can’t keep.
Honesty is critical when it comes to children. They are amazingly perceptive and often understand more than we imagine they would. Maintaining open lines of communication helps children grasp why things are happening to them, such as spending time in the hospital or taking medications. It is also likely to preserve trust and help kids feel safe and protected. Let the child’s age and maturity level guide your discussion.
A child’s understanding of their diagnosis, and its meaning, will be influenced by their age or stage of development. For example, a child’s frame of reference for cancer may be Terry Fox, whose crossCanada Marathon of Hope in 1980 continues to inspire people today. Many children learn about him in elementary school and run or walk in his honour. In this example, it might be relevant to explain to a child the similarities and differences between the cancer Terry Fox had. Try to understand what’s behind the child’s questions.
Sometimes children worry about things that we, as adults, hadn’t even considered. One strategy is to try to find out the question behind the question. For example, if a child asks “why does my brother have cancer?” a response such as “what does cancer mean to you?” or “is there something you’re worried about?” might help promote conversation or uncover what they are wondering most about. Don’t forget other kids may also be affected emotionally by the situation.
A child with a serious diagnosis is likely to have siblings, cousins, friends and classmates. Often, these other children are at a variety of different ages and maturity levels and it is important to appropriately address their questions and concerns, too. Talking with health-care providers:
If you’re a parent or caregiver, it’s natural to feel overwhelmed. To be prepared to speak with your kids, here are a few suggestions to help you manage the situation and communicate effectively: Write down your questions.
When faced with a serious diagnosis, it is normal to have many questions and not know what to ask or where to begin. Keep a pen and paper or your smartphone handy to jot down questions as they come to mind. This strategy can help you organize your thoughts and keep track of what to ask different care providers. Take care of yourself.
It can be easy for parents or caregivers to get caught up caring for the child and overlook caring for themselves. It is important to take care of your own needs — sleep, hydration, regular meals, self-hygiene and mental breaks are essential. Some parents find it helpful to take turns at the hospital or accept support from extended family members or friends. Journaling is another method that may be helpful as a means to write down feelings and emotional thoughts. Open communication is key.
Many parents educate themselves and do extensive research, which may lead to questions. We appreciate openness and will welcome any queries, no matter the topic or how big or small. Please don’t hesitate to share your questions, thoughts or feelings with the health team, so we can work together to ensure your child receives the very best care possible.
A parent’s natural instinct is to protect their child. Although we can’t always shield children from the difficult things in life, we can help them through by opening the door for conversation and preparing them for what lies ahead. Dr. Danielle Weidman is completing her fellowship in the Division of Haematology/ Oncology, Department of Pediatrics at the University of Toronto’s Faculty of Medicine, where she is also pursuing a Masters of Health Science in the Translational Research Program. Doctors’ Notes is a weekly column by members of the U of T Faculty of Medicine. Email doctorsnotes@thestar.ca