Dear Medical Professionals,
A recent message to the List Serv from a woman who was unhappy with the medical care her daughter is receiving has compelled me to write this.
I know that your jobs probably require long, exhausting hours, and the last thing you want is to be told how to care for your patients. My goal is not to upset anyone, and this isn’t directed at any specific person. I give all of the doctors, dietitians, genetic counselors, etc. props for all that they do! So many of you are amazing, and I wouldn’t be who I am today if it wasn’t for some of the awesome medical professionals who came into my life. Think of this more as friendly food for your thought.
Next time you are seeing a patient keep in mind that…
1. We are people first and people living with a genetic disorder second. If we forget to draw blood or send you a diet record understand that we attend school, work, extracurricular activities, and so on just like everyone else. We are trying our best, we really are. We’re just trying to lead lives outside of the medical world as well.
2. Some of us aren’t as clueless as you might think we are, so please don’t be offended if we want to try something our way first before doing it your way. It’s just that many of us adults and parents of older PKU children have been dealing with PKU long enough to have a few tricks up our sleeves.
3. Most of us want to have a positive relationship with our medical team. We like it when you get to know us as a person. It makes us feel as if we are more than just a name with a disorder slapped next to it, and we are more likely to trust you if you show us that you truly care.
4. We need you to stop and ask yourself if the medical advice you are giving us is really practical. If it’s not chances are we aren’t going to be able to do what you are asking of us, because sometimes it’s easier said than done.
5. We are going to make mistakes, and when we do we need you to be understanding. There is nothing worse than knowing you made a mistake and feeling even worse about it, because you are being reprimanded like a child. This is especially important to remember when you are working with teens! Being a teen is difficult in general. Being a teen with a genetic disorder is harder. Just be gentle and try not to give them one more thing to stress out about and dislike in their lives. They didn’t ask for this disorder and are probably doing the best that they can.
6. We might make decisions that you don’t agree with. You need to respect those decisions even if you completely disagree with them. These are our bodies (or our children’s bodies) that we are talking about. We are the ones who have to live with the decisions that are made regarding our medical care, so in the end we are the ones who need to make the final call.
7. If we express a concern about our treatment or an abnormal symptom that we are having we want it to be taken seriously. Chances are if we are taking the time to bring something to your attention it means we really do think it is a problem, and we don’t want that problem to be brushed aside.
8. You should encourage us to interact with other patients living with the same disorder. Obviously this is a little bit more difficult with HIPAA laws, but if you know a family or patient is struggling ask other patients to give consent for you to provide their information to that family (not sure if that is an okay thing to do under HIPAA?). Provide us with information about websites and local support groups, because the companionship and day-to-day advice that we can get from one another is so invaluable!!
9. Although sometimes it’s hard not to give your advice, when it comes to parenting decisions just remember that you aren’t the parent. You’re the medical professional. Your job is to provide medical advice, so please do so and avoid the parenting advice unless someone specifically asks you for your take on a parenting issue.
10. New parents of PKU babies are probably extremely stressed, afraid, and heartbroken. Be mindful of what you are telling them, because the last thing they need is to be terrified even more. Ask them whether or not they want to know only what they need to know right here and now or if they want to be told what to expect in the future. Some parents might not want to overwhelm themselves while others might be going crazy inside, because of the unknown.
11. Everything you say and do can have a huge impact on your patients lives! I cannot say this enough. You might not realize it, but you are so important in our lives and when you treat us like crap we remember it. When you go the extra mile and really provide us with the best care that you know how to we also remember that. Above all if you aren’t in this profession because you really want to help people, then find a new job!
A girl who wants quality treatment for all PKU patients (and all disorders for that matter!)