Can you think of anything more heartbreaking than a child’s life-threatening or life-limiting diagnosis? What can you do? What do you even say? In the past, the answer was to say nothing. Traditionally, kids and even their families were kept in the dark about serious conditions, with professionals assuring very ill children that everything was going to be just fine, all the way up to the point that it suddenly wasn’t.
Since the 1960s, thinking has gradually changed. A review published March 16 in the journal Lancet describes how far we’ve come (unfortunately, the full article requires paid access). Drawing on a panel of international experts, the journal offers concrete guidelines for communicating a difficult diagnosis to an ill child and his/her family. Though the review is written for healthcare professionals, primarily doctors, the guidelines are useful for parents as well.
Though the guidelines are incredibly detailed, offering specific suggestions to shape the trajectory of diagnosis delivery, it seems as if they could be summarized like this: Prepare yourself emotionally and by gathering information; listen first, including getting to know the family’s beliefs and goals; tailor the way you deliver information to the needs of the family and the ill child, including framing information in a way that is appropriate for the child’s developmental level; check for understanding; and make a plan.
The review includes suggested phrases to use with each of these steps in communication, for example, when listening to a child, a healthcare provider might ask, “What do you know about what’s happening to you? How do you feel about this?” And when checking for a child’s understanding, the provider might ask, “Can I check how well I’ve explained things today? Would you like to tell me what you’ve understood so far?”
The goal is not only to convey information, but to help the ill child and his/her family understand that the healthcare provider and care team will support the child and the family throughout the course of the illness journey. It is one thing to experience the challenge of a serious illness; it is quite another to feel like you are experiencing it alone. By carefully shaping and then practicing the way we communicate with an ill child — as providers and parents — we can help to hold the child’s fear, uncertainty and disappointment surrounding illness.
Dr. Pikiewicz earned her PhD in Clinical Psychology at Pacifica Graduate Institute in Carpinteria, CA. She completed pre-doctoral training at the Nan Tolbert Nurturing Center in Ojai, CA, and her post-doctoral internship at the Boulder Institute for Psychotherapy and Research. At both sites, Dr. Pikiewicz worked with a range of adult, adolescent and child clients in individual, couple, family and group settings. She also holds a B.S. in environmental science from Allegheny College and a teaching credential from Western Washington University.