"Always be honest" – How to communicate with critically ill children
"Always be honest" – How to communicate with critically ill children
Interview with Professor Emeritus Dietrich Niethammer, Retired Director, Center for Pediatric and Adolescent Medicine, University Hospital Tübingen
When children suffer from a critical or terminal illness, the first impulse of adults is often to not tell the children and sugarcoat the situation. Yet it is just this type of behavior that frequently causes children to emotionally withdraw.
Professor Dietrich Niethammer promotes honest communication with critically ill and dying children and explains why is it so important to always tell the truth – even if it seems very difficult to do.
Why is it so important to talk to critically ill children about their illness?
Prof Dietrich Niethammer: Until a few decades ago, people believed that children don’t think about their disease and therefore don't ask any questions about it. People didn't realize that children very quickly noticed that they were lied to. That's why they didn't ask any more questions. After all, what's the point in asking a question if you are told a lie anyway?
Yet children reflect on everything. They have many questions and want to talk about their illness and their situation. It is simply a disaster if you don’t realize this and don't honor this request. Children subsequently get the feeling that their worries and fears are not taken seriously. Nobody tells them the truth. And this is something children don't handle well. They become silent, withdraw emotionally and no longer let anybody get close.
How do children deal with the subjects of illness and death or dying?
Niethammer: When children suffer from a critical illness, it alone already prompts them to increasingly reflect on these issues. They subsequently deal with it very logically and openly. And if they realize that the person they talk to is honest, they are also being honest – in their questions and conversations.
How should a doctor treat a critically ill child?
Niethammer: The doctor should be honest and open. Here in Tübingen, we have agreed to always make a kind of "contract" with children at the beginning for their treatment. We promise that we are always honest and tell them everything, even if it is bad news. And we make it clear that the children can turn to us with any questions they might have. The children can count and rely on us for that.
Needless to say, things are somewhat different when it comes to small children versus older children. Small children are not yet able to put their fears into words and they don't understand some things. You have to consider the individual child and see what he or she knows already, what he is able to do and what she is thinking. This gives you clues on how conversations with the child will progress. Obviously, a small child is not yet able to discuss their own situation. However, the fear of being alone is something all children have in common, both the small and the big ones.
Needless to say, it is especially difficult if there is no chance of recovery for the child and when it's obvious that the child is going to die. At first, I often had difficulties to have honest conversations. But if honesty is your foundation right from the start and you promise the child, "I will tell you if things no longer work and we are not able to heal you", it is only logical to also make good on your promise. What’s more, the bad news is also no surprise to these children. During treatment, they make their own experiences and discover how we try to treat the disease. They notice if the treatment doesn't work. That's why the news of them dying also doesn't come as a surprise.
How does honest communication with the child change the relationship between the physician and the patient?
Niethammer: When the children have learned that they can trust their doctor and that no false promises are being made, they realize that their doctor is someone they can trust. This changes the relationship tremendously. As long as the physician only soothes the child, he or she is just a consultant. But if trust has been established, the doctor becomes a real partner. In all of my years as a physician, I have never had a child who broke away from this type of relationship. And a child also never remained silent, once we established an open relationship.
What happens if the doctor doesn't have an answer to a child's question?
Niethammer: Needless to say, there are also those types of situations. But here again, it is important to also be honest in these instances. I would like to give you an example of this. The first time a young boy asked me if dying is painful, I hesitated to answer. I gave an evasive response, "I don't know, I haven't died yet." But that was not a satisfactory answer. "Well I obviously know that but what do you think?", he asked me. That’s when I finally gave a definite answer, "You know, I have often sat next to dying children but I never felt that they were in pain when they died." The boy looked at me with big eyes and said, "That's good to know." For him, this was a clear and honest answer. I believe you can always find an answer but it is just as wrong to say you know the answer. You have to be honest and say, “I am not sure but I believe…"
How do you include the parents or a family in this type of situation?
Niethammer: It is actually much harder to include the parents because many of them initially don't want to tell their children the truth. It takes some time to convince them. Sometimes it also makes sense to talk with other parents who have gone through this. Having said that, you cannot – and should not – tell the children behind their parents' backs. It’s important to first talk to the parents and inform them to subsequently turn to the sick child.
As a young doctor, I once made the mistake of trying to talk to a young girl about her disease behind her parents' backs. But the girl refused to talk about her illness because she realized that her parents did not want that. Despite several long conversations, they remained resolutely against telling their child. Later, after the girl had passed away, I found out from her roommate that the two of them talked about the disease and dying for many nights. And yet the parents were convinced that their daughter was unaware of her disease until her death. But there is also a certain amount of self-protection in all this. It is obviously very terrifying if your own child has to die and if he or she also knows it. On the other hand, this type of honesty is also important when it comes to the relationship between the child and the parents. I keep seeing children who have thanked their parents and said their good-byes.
What advice do you give future doctors?
Niethammer: Always be honest. Don't make excuses. Excuses are evasions and in a broad sense also lies. Even if at first it seems easier to keep things secret from children and avoid difficult conversations, it is counterproductive in the long run. After all, children notice if you don't tell the truth and always evade their questions. But if you are honest, you receive the most beautiful gift patients can give you: their trust.
The interview was conducted by Olga Wart and translated from German by Elena O'Meara. MEDICA-tradefair.com