Advice to Dr.'s of rare or complicated or medically fragile kids

Dear Dr.

You cannot treat parents and patients the same if they have a rare diagnosis or are medically complicated.

I did a blog post touching on this subject a few years ago here.

Here is some additional advice for you dear Dr.

1.  Get to know the child as a person not a diagnosis.  Find out what they like.  Find out what makes them smile.  Who is their favorite person?

2.  Talk to the patient some of the time, even if they are non-verbal.  Don't always talk to the parent.

3.  Touch the patient in non-medical ways.  Touch their hand or their foot or wherever.  This shows compassion and that you see them as a person, not a patient.

4.  Compliment the parents.  Say "You know your child".  "You are doing such a good job".  "I trust you, you are so capable".  Parents are worried literally all of the time that we are not doing everything possible for our child.  We NEED to hear that we are doing well.

5.  Ask the parents what they think is wrong or if they have any guesses.  We have been around the block a time or two.  Even for our non-verbal kids we often have a guess as to the source of the pain, etc...

6.  Do not assume that you know more than the parents or the patient just because you are a Dr. Do not try and show off your knowledge.  We don't care.  We just want our child better. We have looked up more articles on our diagnosis and been to more specialists about our child than you have more than likely.

7.  Do not make up answers to our questions.  We would much rather hear you say "I don't know" or "I don't have an answer for that, but I will research it"

8.  Take notes.  Wrote down things you say you will do.  Make a written action plan as you are talking.  Then before leaving go over the action plan together with the parents.

9.  Know that parents are super tired physically and emotionally literally all of the time.  We live at levels of stress that most people only experience occassionally.  When we are grumpy with you please understand these things.  We are worried our child is going to die literally all of the time.  So when  new problem arises it stresses us out.  To you the patient is a diagnosis, to us they are our life.

10.  Offer your help.  Say "How can I help you today?"  or "What can I do for you today?"