September is Childhood Cancer Awareness Month. When we think of pediatric cancer, we most likely think first of lymphoma, retinoblastoma, neuroblastoma and other types of cancer that are found in children. All horrible diagnoses for the young patients and their families but the good news is that over the past decades, oncologists of pediatric cancer hospitals in the US and other countries have gained significant experience in treating them. Many lives can be saved nowadays and great progress is continously made. However, very sadly not every young adult, teenager, child, toddler, …. with cancer can be helped …..
Dr. David N. Korones from the University of Rochester Medical Center recently published in JCO an article about a teenage patient diagnosed with diffuse intrinsic pontine glioma (DIPG). DIPG is not only rare but also treatment options are very limited – thus prognosis extremely poor.
What caught my attention about Dr. Korones paper was that it was not a research article about recent discoveries and therapeutic innovation but a recommendation how to communicate with fatally ill young patients. Health Care Providers like Dr. Korones see a new patient, beautiful and full of curiosity about what is to come in life, knowing things will change drastically very soon. What should a medical doctor do in such a situation? How to speak with families and patients? Guidelines published the results from studies showing that most young cancer patients deal better with their life-threatening disease if they know about what is going to happen and they are given the possibility to talk about their death.
Dr. Korones points out that MOST patients does not mean ALL patients. His patient did not want to know. She wanted to fight and not loose hope. I was glad to read that everybody respected that – her family and other HCPs included. Parents know their children best. That was one advice Dr. Korones received from his colleagues. So everybody waited until the very end to speak with her about her end. What a difficult situation! It turned out that it was the right thing to do NOT to follow the guidelines in this case.
I deeply admire the work of all medical oncologists and believe that pediatric oncology is even one level harder. How to not end up with a broken heart each time a patient is lost?! Communication is here one tool to protect, help and support the patient, family, close friends and the doctors themselves. Doing it right is a crucial art. Often there is very little time left to undo what was said and perceived the wrong way.
Therefore, communication needs to be innovative as well and constantly adjusted. The world is changing over time. Guidelines from a few years ago may not be up to date anymore.
David N. Korones (2016) Talking to Children With Cancer: Sometimes Less Is More. JCO Volume 34 #28 pp 3477-9.