Again, a random Twitter comment has started off a train of thought that a comment from @Adsthepoet had been germinating for a while (I think I’m blogging more because I don’t have him to discuss things with, so they either stay in my head or get blogged… or get inflicted on my partner late at night)
I’m not at #RCPCH15 but I’m following the tweets. There’s a discussion about how engaged patients and families are on ward rounds (and I would suppose in the rest of the hospital day). Adam knew this mattered “In a good hospital, the staff talk to me and involve me in my care” and I think (in theory) that most of us would agree with this. I suspect that most of us believe that we do it; that the situations that Adam described were exceptional. There isn’t much research about communication between parents-children-doctors, and to be honest, what there is doesn’t really reassure me that we’re doing what we think we are. We think we’re involving children, but we’re much more likely to be making social chit-chat than discussing management options and making plans together.
So, why does this happen? One response suggested that professionals don’t see children & families as a reliable source of information compared to the familiar ones, like medical notes (which are obviously 100% accurate and never contain any errors. At all. In any way.)
I question this. First, I doubt the accuracy of medical notes over the recollection of children and families. Sometimes the words and terminology are different (“she takes the blue puffer when her stomach goes up and down” rather than “10 puffs salbutamol PRN for respiratory distress”); sometimes people are tired/overwhelmed/frustrated and don’t have the answer for “when did the Nissen’s take place?” Although I have also been on the ward round where the consultant went through a huge stack of notes trying to find an operation date whilst ignoring the mother who had been by her child’s side ever since he was admitted and knew exactly what had happened and when.
Second, the medical notes tend to be just that: medical. To use the salbutamol example, they describe a medicalised view of the world that might not be relevant to that child and family. “Respiratory distress” means different things to different people (whether clinically trained or not); asking a parent what they look for before they give an inhaler is going to give a more realistic indication of that child’s symptoms than sticking down a medical term.
I might know some medicine; I am not an expert in another human being or family.