Recently, I had a patient arrive to the clinic for another check up with the oncologist.
When I arrived in the clinic, the patient ran away from me and threw himself on the floor. He began kicking, thrashing and loudly declaring that he would “NEVER” go back to his room for his appointment.
I first began talking to the patient’s dad about the importance of validating the patient’s fears while also setting firm boundaries (for example: keeping his hands and feet to himself when it was time for his port access). While I was talking to the dad, the patient became very still as he laid on the ground with his face pressed into the carpet. He was listening to every word I was saying. Listening intently.
The patient’s dad shared that he felt the patient was displaying such opposition today because he worried he would be admitted to the pediatric unit. You see, the patient just had an unexpected ER visit a week ago. This sort of regression in coping can be common when children facing chronic illness experience some sort of change in their treatment and routine.
Because I wanted the patient to be able to visualize all the steps that would happen during his visit, including the step of “go home” opposed to “be admitted”, I created a checklist for the patient to complete.
I sat down next to him and explained, “We all care about you– your dad, your doctors, your nurses, your social worker and me! We all want to make sure that your body stays healthy and strong, and that is why you are here at the doctor for your check up. There will be no surprises today. We will tell you every step when we learn what your body needs for today. And I wonder if you can be in charge of the steps today?”The patient immediately sat up and smiled.
“I get to be in charge?”
“Oh yes! Here are all the steps for the day. Each time you do the step, you get to cross it off. Do you want to do your port access step first or your vital signs step first?”
“We all care about you…we will tell you every step when we learn what your body needs for today.”
Side Note: In the world of oncology, there are unfortunately no guarantees. Oftentimes, a child’s treatment is very “count dependent” (meaning that the team doesn’t really know the plan in its entirety, like if the patient will need a blood transfusion or a change of medication, until they received the blood work results following the port access.) Therefore, I had to even be careful of how I assured the patient to help him feel safe. Though the likelihood of him having to be admitted was extremely small, I instead took the approach of letting him know that we would let him know if there were any changes for the plan based on what his body needs.
The Patient Checklist in this post is re-created. For my patient, I did included pictures of actual patients (who I obtained a consent) going through each step (including a port access). The pictures of a peer appeared to resonate with the patient and he asked questions like, “is this boy my age too?” or “what helps him when he has to get poked?” These questions opened up wonderful conversation for us to rehearse coping skills.
The patient was then given a clipboard “just like the doctors” and was able to cross off each step he willingly did with his jumbo red crayon. We all were greatly impressed by his change in demeanor from being the kid that was flailing on the floor to then being the kid that did smile and wave goodbye when he was done with his appointment…the last step on his checklist.