Hey Doc! Here’s what I think

Should doctors care what parents think?

As a parent my answer is a profound, “Yes! Of course.”

As a parent who has been managing more than her fair share of doctors on her daughter’s behalf I know the reality is that some do, some don’t, some do at times and not at others.

The really good doctors come to learn that the parents know a lot more about their kid than they ever will. I have this information from two great doctors who have been intimately involved in my life because they saved Ellie’s many times. I saw how they set the standard for parent doctor interaction on their teams (as they were both in leadership positions) and how they walked their talk. I also saw how the doctors they mentored also learned to listen to us and discuss with us versus tolerating our half of the conversation like some. These mentees internalized the value of listening to the parent. The two lead doctors set the stage. In my profession this would be the leader influencing and shaping their organization’s culture.

There is another doctor that has been excellent in treating Ellie who also listens to what I have to say. I know he really is listening because he looks at me when I speak. He doesn’t interrupt. He asks thoughtful and relevant questions based on what I said. We discuss Ellie's care in depth each visit so that we are both clear on the go forward plan of action. In this way talking to him is like to a peer. I am sure you have felt it when someone does not do these things and you don’t feel heard. By listening in these ways he shows me that he values the information I give him about Ellie. He is smart to realize that he can treat her better with this data. He has even admitted that he was wrong and I was right when we disagreed but he let me try some things with her that actually worked great for her when he thought they would not. I am not sure what his background is but I know he spends a fair amount of time treating children in third world countries on his own dime for nothing. I have never seen him in the $5,000 dollar suit and I know that he is well loved by everyone I have ever mentioned him to. He has somehow managed not to lose his down to earth sense of reality in becoming a doctor. He manages to connect with his patients and in doing so has become great.

Sometimes the issue of doctors NOT listening is one of elitism.

It goes way beyond the pure act of not listening to the parent, as it is a prejudice that is formed well before you ever meet them. It’s about superiority of intelligence, socio economic position and power. In our society we give doctors the halo. They are treated like gods. They are authorized by society a high status that bestows upon them instant credibility, superior intelligence, honesty and trustworthiness, and right thinking.

They are trained to have the ego of a god so that they might be able to say cut into the human heart and repair it and other such amazing things. You would need a lot of ego for that. What is lacking is a balance between the necessary self-efficacy to perform as a doctor and having respect for those of us outside their circle of demigods, which happens to include the patients and parents of patients. In my profession I would call this last group the customer or end user as well as major stakeholder.

From reading Danielle’s blog I realize that doctors often see the worst of human nature and that may jade them forever (not that Danielle is jaded, in fact she is just the opposite – inspired and engaged and I love her blog). I also realize that doctors have the same human frailties and personality quirks as anyone else. The difference is that they wield power, as given to them by society, in exchange for their ability to help their patients survive. I think some of them may at times forget that they really don’t have a halo.

There is or at least was a movement in the medical world to help doctors see the other side of the patient’s life. Some friends of ours actually hosted a doctor in this program in their home so the doctor could really understand how the care of their patient looked in the home - in life outside the hospital. This seemed revolutionary to me and when the renovations are done in our home I want to be such a host.

I hope this trend toward developing the doctor’s ability to see the whole person versus the “knee” or the “fundo” continues. However, because doctors are fallible and only human like the rest of us – there will be those who get it and those who don’t.

As a parent I can help a doctor listen to me better by being informed and knowledgeable about my child’s issues. I can also be on time and prepared for doctor’s visits. I don’t want to contribute to the wait of another parent or patient. To prepare I usually review what happened in my last visit. I discuss with Dave questions we both have and write them down so I don't forget. I also bring things that are needed depending on the issue. I am not always perfect in this, but I strive to be prepared in this way before each visit. It is much easier to do this if Dave comes along to help with Ellie. I usually take a note pad to take notes so when the doctor is rapid firing suggestions for treatment and things I should do at home or in therapy I can capture them. When Ellie was born we started keeping a book of days on her every day. We would track her progress, meds given, weight gain, development, everything we saw. We stopped last year but have started again because with this book we can look back and say, ok this irregular eye movement started on this date which also coincided with this new med, etc. You get the point.

When I am on my own with Ellie it is very difficult to take notes but I try to just the same. Taking notes also alerts the doctor to the fact that I am paying attention and engaged in Ellie’s care and treatment. The point is that there are two responsible parties – the doctor and parent.

Today I heard that some of the doc bloggers do not want parents to participate in pediatric grand rounds. I think they don’t get it.