You are a Pediatric Specialist.  You work in an office attached to a hospital, and you are an expert in your field.  You do amazing things.  You know the liver, heart, lungs, bone marrow, and tiny tiny cancer cells better than anyone and you know how good you are.

Us parents aren’t trying to discount that at all.  We get that you earned your position, it wasn’t just handed to you.  We get that diagnosing complicated and rare diseases is near impossible to get right the first time.  Especially when the disease fits nothing that the doctors have seen before.  Especially when it’s such a rare disease that the doctors only heard about it back in medical school.

Even knowing that, though, it’s sometimes very difficult for parents to fully trust physicians.  Our child is a living piece of our soul, and mine nearly died while in the care of a small herd of physicians who legitimately didn’t know what was wrong.  Us parents often have to watch our babies suffer through countless tests and procedures just to get answers.  And we struggle to cope with the lack of trust that comes with watching that pain.

I’m not going to make sweeping statements about bedside manners or spending significant time with patients.  I get you have 40 patients to see on this floor in the next three hours on top of reviewing tests, doing research and otherwise trying to save a bunch of kid’s lives.  And bedside manners matter very little to me if you know what you are doing.  But I do want to explain to some doctors why they find so many of us parents difficult… on good days.  And I wanted to give you guys a few simple tips for how to deal with us… we aren’t at our best and sometimes it’s easier to deal with moody creatures from a distance… with long sticks… and cattle prods.  So here’s your weaponry  and defensive materials for dealing with us.

1.  Patience.  This is going to be your best weapon. We haven’t slept… pretty much since we found out our babies were sick.  People with little to not sleep are short tempered and often have a harder time understanding things as fast as they should.  Taking care of a sick kid is 24/7, and most of us have other full time jobs and other kids on top of our sick child.  So we are stretched thin.  And Lord, if our child is inpatient, it is near impossible to sleep in a hospital. We do require LOTS of patience right now.  Sorry in advance.
2. Speak slowly and clearly.  We aren’t stupid.  We are tired and stressed.  When we seem irrational we aren’t trying to be.  Our brains aren’t booting as fast as normal and we are having to deal with trying to catch up to what you just said.
3. Use plain English. You are medical experts, so when your colleague says that my child needs an endoscopy to band varices, you get it.  To me, when you repeat those words, you just said something in Swahili and I need to get out a google translator to try to understand what you just said.
4. Give it to us plain.  Don’t sugarcoat it.  So many doctors want to keep the parents upbeat so they don’t tell us the full story. If our child has a rare form of cancer that is really hard to treat, say “She has a rare form of cancer that is really hard to treat.”  If she’s in liver failure and you have no idea why, say “She’s in liver failure and we don’t know why, but we are going to keep searching until we figure it out.”  We need to know whats going on and what the next steps are.  We need to know what our job is over the next week or month or year.  We aren’t weak, despite the lack of sleep. We can get through this.  But we need you to keep us informed of the diagnoses, the medications, the risks, and the benefits.  Without that information, we can’t make the decisions you need us to make, as the medical advocates for our child.  And  you need our signature on that medical treatment form.  When we can’t answer your questions, we just consume more time and frustrate you.
5. Print out explanations of what you are trying to tell us.  When you are going to explain something medical to us, go to a website that you trust and print out a plain English translation for us that we can read later.  Plain English it for me.  If you anticipate a long discussion with us to change a medication or a chemo or a procedure, call the floor that morning and have the nurse deliver the print out to us when they do the morning vitals. It could make your explanations MUCH shorter and help us feel a bit more in control, which will help our control of our own tempers.
6. Have the nurse print out the labs and radiology reports for us.  Have them delivered before you do rounds.  It could cut off time you have to spend explaining my child’s condition to me, especially if I can already see that her labs are improving.
7. Be open to working with other doctors.  In this digital world, your patient’s parents are going to talk to person X on the other side of the country who is working with Dr. Y on the same disease.  Talk to that doctor if your patient asks you to.  It’s a phone call. Especially if the disease our child has is rare.   A doctor in Texas is the expert in my daughter’s cancer, and he consulted.  The chemo that eventually killed the cancer came from him.  My oncologist was a saint and from day 1 understood that someone else knew more about the disease.  And because of that, I have my daughter still.
8. Talk to the other doctors providing care to the child.  That child doesn’t just have cancer.  She has cancer in her liver, so she has a hepatologist and a GI specialist working on her too.  Talk to them regularly.  Put it in your schedule to talk to them prior to your next appointment with her to coordinate the scans/tests/surgeries, so you can cut down on the number of times the kid has to be put under and lit up like a day-glow light, and so that you know what the child is on and how she is doing medically outside of the cancer.  You’re treating a whole person, not just the cancer cells.
9. Listen to us.  I know my child better than anyone under the sun.  I can give you information about a medication or treatment that may surprise you, may even sound impossible to you, but I guarantee I’m right about her response to whatever you’ve just done.  Look at your patients as opportunities to learn about the surprising way the human body may respond to the mundane. It can defy all logic, but it happens and the parent is going to be your source for the initial information on the child.

I get that these things might take a few extra minutes in your day, but they could actually be a time saver, considering you won’t have to spend useless time dealing with my constant questions if I can get answers from the nurse or the print outs and your patient explanation the first time around.

And Thank You.  I can’t say that enough.  Without you guys, I wouldn’t have my daughter.  So Thank you.