10 things we want new doctors on our case to know

This week we met a new doctor to us. This doctor was very kind and listened well, but I could hear an undertone of pity, something I have gotten use to hearing at times but sometimes it feels really frustrating from a medical professional. It made me think about the things I wish new medical professionals joining our team knew because my oldest is almost 7 and has been medically complex from a very young age which has meant some coming and going of different medical professionals. Here is what I would love the new members to know:

1. There has been a lot of history before you became involved. This is true even with a medically complex baby. Know that any history you are getting is only an over view. A parent is not going to tell you exactly how much a kid vomited every night for the first 3 months and a family with an older child is not going to give you a run down of every hospital stay. Know the parent is telling you what they think is most important to you, often out of trying to be respectful of your time. Ask more questions if you need to know about specific things in a history but do not think that just because a parent left it out of their brief oral history that it did not happen. 
2. Read at least a little bit of the chart before walking in to meet a family. I know medical charts are long and there is often a bunch of information there so it can be hard to find the information you need. But always try to get at least a generalized idea about the child. 
3. If there are big tests of surgeries you are thinking about recommending make sure the family has not already explored those options. Our family went for a second opinion and despite having every medical record, their big take away for us was to look into a surgery that we had a surgery evaluation for already that had been decided to not be medically appropriate. And there had not only been one appointment about this surgery but many across many departments over many years. That told me that they had barely touched our medical record because discussion of this surgery started when my oldest was 2 months old and had continued to be something that was talked about until she was 6 years old. Then to a family you come off as lazy. I do not expect every doctor on our team to know the full results of every test that we did however if you are recommending a test or surgery make sure we did not already go down that road. 
4. Ask a family how they view quality of life. This is going to change between families and it changes a lot of how you interact with a family. Every family is going to see what does and does not work for their family. Just because one family sees it one way and another family sees it another way does not make one of them right and the other one wrong. Every family is going to see things a little differently therefor your job is to navigate that. Don't make assumptions on how a family feels about something. 
5. Acknowledge the journey that has come before. Know that a family has worked hard before they ever came to see you. Recognize that without pity. 
6. Remember that you have not been there for all of the hard moments before. If you are coming in part way through a medical story, then there are really hard moments that you missed because you were not on the team then. You can not pretend like you know how those moments went or how they felt for the family because you were not there. You can hear those moments retold but time has passed since then so the emotions might not come out the same.
7. Know the families change. For the fist 6 years of our medical journey we said yes to almost every medical test. We were searching for a diagnosis and willing to do a lot to find one. At this point in our journey we are now making our medical professionals really sell us on why we should do a medical test because we feel the toll of all of the years of intense testing. Its not that we regret those years where we were sprinting, but we also have come to the realization that we can not keep that up long term. Our priorities in some things have changed over the years and if you meet us know we might seem less determined to find a diagnosis, and that is not true, just how we are going about it has changed. Families are allowed to change their minds in different seasons.
8. Recognize that this family likely has been hurt. While you might be coming in new to the situation and might have the best intentions and bedside manner, if you are stepping into a medical journey know the likelihood is that at least one of your colleges has hurt this family along the way. Each family is going to have a different story about who hurt them and how. Know the doctor that hurt this family might be someone you really respect, that does not take away this family's feelings about that person. Different families are going to bring that pain forward in the journey with them in different ways, and while it might not feel fair to you how the carry that forward, know that the pain was caused by a professional, something a family never asks for. Most families start out with the mindset that the medical profession is there to help their kid, but over the years sometimes that mindset can feel harder to hold onto. 
9. You need to earn trust. Just because a family trusts the doctor that wrote the referral for them to come see you, does not mean that they automatically trust you. Trust needs to be earned, and sometimes for families who have been on a medical journey for a while, it takes them a little longer to trust, which means you need to work a little harder. 
10. Families want what is best for their child. I don't think this comes out in as much of a sunshine way as it once did from me, but that does not make it any less true. I want what is best for my kids. Sometimes that is going to mean that we work together as a great team, sometimes that might mean that I am pushing back against you. Often in the push back it is not because I hate you, it is because I love my kid so much that I am willing to push back to do what I think is best for them. If I push back it does not mean that I think you are stupid, it means I think you are not thinking about this from the same angle I am about my child. Most families really do not want to fight with medical professionals, they want to take care of their kids. Often when families do fight it is because they feel backed into a corner with no one listening to them. You can defuse that. You can be the person who changes that. You can be the professional who helps to partner with a family. 

Bonus: check your God complex at the door... we can feel it, and it always comes off yucky. Admit what you do not know. You might be the expert in my child's symptoms, but I am the expert in my child. You were not in the car when she turned blue nor where you sitting next to her bed when she went unresponsive, I was, and your God complex does not change that, it just makes you sound arrogant. So listen to families and remember that you can not do it all, you need to be a partner with this family

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