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hat do you do when you go through the emergency room with a team that hasn’t seen your child before?  Or you are having difficulty managing pain during a night shift and your typical team is gone?  There are dozens of situations where it is important to sort through confusing information or advocate for your child.  Aggressive responses can lead the doctor’s to become defensive but being too shy to share a problem could have consequences.  These are tips I learned (the hard way) on how to discuss issues with the doctors.

1. Ask Open Ended Questions

It took me a long time to understand the importance of asking my doctor for more information about something that concerned me rather than telling them what I learned and what I think they should do about it. They sometimes responded to my “aggressiveness” by either signaling they needed to move on to another patient (“We’ll check in on this later”) or suddenly being much more forceful with their original advice.  Neither response was gave me the information I was looking for. 

Here are some examples of open ended questions you can ask to GET ANSWERS:

 If you don’t get a direct answer, take a second and ask it again, mentioning which part of the question wasn’t addressed or the part of their answer that doesn’t make sense to you.

2. Summarize to the doctor what you heard them say.

Doing this lets them know you are listening and they aren’t wasting their breath. This is a good skill to use anytime you really need to understand something or if there is a disagreement of some sort. If it sounds like they are repeating themselves and you feel like something is still missing, write down what they said and ask another team member.  This tip is short and sweet but SUPER important.

3.  Be Clear About How You Feel

This is the time to practice being vulnerable!  Childhood cancer, hospital stays, operations, MRIs…. All of these things are the opposite of normal and it is expected you will be scared.  You may feel like medical staff won’t listen to you if you are being emotional.  Still, feeling words clue them in to keep communicating with you because something isn’t right. The main thing is, use words that you wouldn’t use for everyday situations.  

Examples:

Check out this emotion wheel for feeling words rated “high”.  These won’t get you kicked out of the hospital but have the same effect as those other words.

4. Know WHO To Ask

I can never forget the night I had with a nurse who insisted that the aspirin my one year old kept throwing up was enough to manage his pain. There were many tears that night and not just my son’s. At the time, I didn’t know what to do beyond pleading with her every time he vomited and eventually resolving to wait until shift change and complain to the next nurse. I was horrified to encounter the same problem again the next morning! My night nurse had apparently told all the other nurses to be careful about giving my baby meds he didn’t need at my request (one nurse finally told me!)  Eventually, I learned there are other people beside my nurse who I can speak to when I have an immediate problem.

Your nurse is usually a button push away so it makes sense to address things with them first and they usually know where to go from there. If the nurse is not being helpful, next you can request the Charge Nurse. You can also request a doctor to speak with.  If all else fails, seek someone in administration or the patient advocate. You can find their number by searching on the hospital website. Let’s face it, nurses and doctors may talk amongst each other before seeing you. A patient advocate is a fresh pair of eyes whose job is based on supporting you. They are there for a reason. Here is an article from the LATimes that describes this process further.

What are your tips for talking to doctors? Let us know and we may include it in a future blog!

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inally, a resource that is relatable and interactive for kids to practice coping with childhood cancer! This coloring book was created specifically for children going through cancer treatments and their siblings. When our son went through cancer treatments, we couldn’t find many easily available, interactive resources that helped children deal with cancer. This coloring book gives kids tips on how to cope with negative emotions that often come with chronic sickness and frequent hospital stays. The illustrations were hand drawn by our 14 year old niece who wanted to use her passion of art to help and make a difference.

Cancer kids and siblings can color kids who look like them, whether they have a head full of hair or not. They are invited to write what they can do to feel better when they are sad or angry. This resource has been donated and well received by several hospitals such as John Hopkins and Children’s Hospital of Atlanta and cancer summer camps such as Camp Quality.