Doctors Should Be Partners, Not Dictators

Caroline undergoing a medical procedure that required her to be still.

When I was young, I held intelligent people in the greatest of esteem; as I am growing older, I realize I now most admire those who are kind and empathic.  I research doctors; I try to get Caroline appointments with well-established, accomplished clinicians. But it is not until I meet a doctor or therapist that I know if our relationship will endure.  Yes our relationship.

I don’t have a medical degree but that doesn’t stop me from reading literature.  I don’t think that reading literature makes me a doctor; I think it makes me an informed parent and patient who will partner with a medical team to come up with a medical and therapeutic treatment plan for Caroline.  I will not blindly consent to procedures, tests, or medication.  I will research protocols and calculate the cost-benefit to determine if the side effects are worth the risks.  I am the person best situated to calculate whether the potential benefit of a protocol is worth the risk, not some scientist who sees my daughter on a quarterly basis.  I am the one who stares into her big brown eyes as she signs and tries so very hard to verbally tell me what she wants.  It is me who changes the feeding tube in her stomach every three months.  And as hard as it is to admit--I don’t know my daughter well-- because no one does—she is locked inside of herself to some extent. I do, sure as hell, know her a lot better than any member of her medical team. 

Flashback  

 I am 28 years old standing in a Pediatric Intensive Care room in Phoenix, Arizona. I haven’t slept or showered in days. Instead of eating, I opted to inhale cigarettes (don’t judge, I feel bad enough about my stint as a smoker). I was the shredding thread holding my family together.  Doctors were making rounds; I slapped some water on my face hoping it would wake me up a bit.  Brit was the first the kid being rounded on—if you have spent enough time in hospitals you know that is not a good thing—in the PICU doctors visit patients based on the seriousness of their illness. The neurologist walked in, he started talking and quickly revealed that he had not read the labs that had come in overnight or the notes left by his colleagues.  With some edge, I suggested that he step out and take a few minutes to review the chart before making any further comments.

The words just slipped out of his mouth so causally, “I understand what you are going through but you need to calm down.” I took a deep breath and (rather loudly) said….”You know what I am going through, you understand?  What hospital PICU is your daughter in, what crosstown hospital is treating your dad because I would really like to send them flowers. Don’t you DARE assume you know what I am going through because you read words on paper.  I realize you are a neurologist and CRAZY smart but I encourage you to work on your bedside manner or take a job in a lab. By the way, that was your one mistake.” 

His only response, “One mistake?”

“Yes, I can remove anyone from Brit’s care and you are dangerously close to being adding to that list. And yes, I know what an “interesting” case she is.”   

It was in that moment that I gained my voice.  There have been times since that I have questioned myself more than I should but my confidence grows daily. Between the experience in Brit’s PICU room  and being Caroline’s mom I have not only learned how to advocate but I have forced myself to question doctors with the most impressive credentials.

I don’t want to give the impression that I am always combative when working with doctors and other clinicians because I am not. But I am not afraid to fire a doctor, lodge a complaint, or push back regarding a treatment protocol.  I have grown to accept, “you catch more bees with honey than vinegar” but also believe that it is important to advocate and not to think a doctor knows more than you. 

10 Things Every Parent of Medically Involved Kids Knows (and Every Parent Should Know)

1. You know your child better than anyone else—don’t ever let a doctor convince you they know your child better than you do.  Now, I am not advocating for denial—so use this advice cautiously.  If you don’t agree with a doctor ask questions, if you can’t get answers get a second opinion. 
2. When raising a medically involved child—sometimes finances prevent us from providing our children with what is best. I am no longer shy about asking if the doctor has any of the formula that costs our family $900 a month because insurance won’t cover it.  Ask for samples.
3. If you don’t think your child is responding to the medicine or is experience side effects…call the doctor…insistent on talking to the doctor…explain the potential issues. Listen to what the doctors says and then call the pharmacist.  Use the information received from both of them to determine how to proceed.
4. Trust the pharmacist. If your pharmacist expresses concerns about filling a prescription for your child and ask them to explain their concerns—if they seem reasonable call your doctor before starting the prescription.  This happens more than I would like with prescriptions we receive from urgent care (and generally for Vivian because I try to avoid taking Caroline to urgent care).
5. Urgent care is great for your typically developing child but unless you have no other choice, don’t take your medically involved child to urgent care. If you are seeking treatment for an accident you will have to convince the doctor you are not a negligent parent. If you are seeking medical treatment for an illness…let’s face it our kids’ medical histories are too involved for an urgent care doc.
6. If a doctor is being rude, curt, or dismissive—tell them. I generally say something like, “I find your tone to be very dismissive and I don’t appreciate it. I have waited months for this appointment I would really appreciate if you take a few minutes to just answer my questions.”
7. Go to appointments prepared.  Always bring your copy of medical records with you, have a list of recently ordered tests, and have a list of questions prepared this shows you are respecting the doctor’s time.
8. If your child has sensory issues or does not do well waiting for prolonged periods of time—call the doctor’s office before you leave your house.  Explain to the office staff that your child has special needs and does not do well in waiting rooms so you want to see if the doctor is running on schedule—if not, how behind is he or she? 
9. Whenever possible bring another adult to important appointments so you can really listen to what is being said.  If you cannot bring another adult bring 2 or 3 of your child’s favorite toys, a drink, and a snack…anything that might occupy him or her so you can have a conversation.
10. Remember doctors are mortal beings and might just be having an off day. This is harder advice to swallow when you have waited three months or more for the appointment. However, if you think your doctor is just having an off day, kill with kindness, “I can see you are in a hurry but I really want to understand what this means—can you please explain it one more time or can you ask a nurse to explain it to me? “

I hope you find these tips helpful…remember it is your job to ask questions so you can advocate and prioritize your child’s care.Do you have any other helpful tips?