One weekend I was taking care of a sweet little toddler with cancer and his mother. In report, the outgoing nurse had told me that we were to hemoccult test any stools for hidden blood. It is an easy test, which consists of taking a two small smears of poop from the diaper, smearing it onto a small card, waiting 3-5 minutes, then applying developer. If the color changes to blue, the test is positive, meaning there is blood in the stool. No color change is negative. Simple process. My little friend had a resolving bowel obstruction and had not pooped for a few days, so in the back of my mind I was not really planning on any stools on my shift either.
Wrong.
Right around 3:45am when I checked him, I noticed his diaper was soaked through with liquid stool. And his blanket. And the chux pad below that. And the sheet. Mom helped me changed him and get him all cleaned up, change the linens, and get him tucked back into bed. Not a quick process for a little guy with lots of pain. As I was cleaning and changing, in my mind I was planning out what needed to happen next. As is common with oncology patients, he had what seems like a million labs that needed to be drawn at 4am. The clean-up took nearly an hour and by this time it was almost 5. I was behind. I needed to draw my labs and get them sent so the results were ready in time for rounds. And I had another patient to check on as well. Without thinking twice, I weighed the hefty diaper and threw it in the garbage.
Thank goodness my trash had just been emptied. As a finished my charting a few minutes later, Mom asked me “Liz, did you hemoccult that diaper?” I turned around and looked at her, and saw that she was sitting in the chair with “the notebook.” Every oncology family knows about the notebook. The notebook that comes to every appointment from the day of diagnosis. The notebook that is open every day at rounds, where the patient or a family member is generally trying to write down notes, phonetically sounding out words that they have never even heard of before that will soon become daily vocabulary. The notebook is dated and filled with daily lab values, medication lists, and dozens of questions for the healthcare team. I know the notebook well; we have one for my Dad. Several in fact. He has one. My mom has one. We review it before every appointment. Oncology families always have the most detailed notebooks. Maybe it comes from trying to keep track of the million different lab results, which, for patients on chemo, are constantly changing and need to be vigilantly monitored as they are the best indicator of immune system compromise. Or it’s the list of medications that is pages long, constantly being tweaked.
“Oh my goodness, I totally forgot! Thank you for reminding me,” I told Mom, as I dug the diaper out of the thankfully clean trash can.
She immediately apologized. “I am so sorry, I’m not trying to tell you how to do your job,” she said, a little embarrassed. “You’re doing such a great job with him. I knew he’s a busy assignment. I just… I remember them talking about keeping track of the hemoccult….” She trailed off.
I thanked her again and reassured her that she was doing her job as his advocate to remind me. Nurse, doctors, and other members of the healthcare team are only human. We make mistakes. We forget things. We need to be kept accountable. That, to me, is the role of the patient advocate. To work together as a team to ensure that our loved ones receive the best care possible.