By John Scott, IPEP Intern
Being at the hospital with a sick child is never a parent’s idea of a good time. Add to that a complete stranger convincing you to take part in a study, and you can imagine how the parents may feel. But this isn’t any average study; we want to explore how surgeons communicate with families by recording the consultations our families invite us to be a part of. Expectations of medical procedures can vary greatly between physicians, patients, and their families. To understand why, you only have to consider the variety of factors that go into making a decision, such as the difficult process of deciding whether your child should undergo surgery. Making this decision, much the same as any other medical decision, is complicated by understanding the procedure, anticipating the outcome of the procedure, and figuring out what “improvement in your child’s condition” realistically looks like.
Obtaining informed consent to record the consultation is a small role in the grand scheme of the project, but in that moment, talking with the families, it felt like the most important. I’ve seen this talk happen several times, yet I can’t help but feel my heart racing while I wait for the family to settle into their seat where in a few moments it will be my turn to speak with the family. I’ve prepared my speech, went over what I plan to say in my head several times, and even had a checklist of items I needed to cover if, for some reason, I lost my place. Even with all this preparation, I can’t help but feel anxious when I approach any family.
I spoke with one father both before and after their appointment after I obtained his consent to be in the study. It had been a journey to get his child in to see the doctor, which began at least a year prior to our conversation. He was the textbook example of being an advocate and champion for your child. I heard his story, understood the reasons why he kept pursuing different opinions, and finally saw that he was pleased with his visit and the care that his child would be receiving. We spoke for a short while before they left for some final tests and then for their home several hours away. The last thing I remember I told him was “you’ve done everything for your child, you were his advocate and pushed to make sure he received the care he deserves, and I would be lucky to have someone on my side like you”.