As told by Carole Hemmelgarn
My name is Alyssa, and this is my 4th grade picture; I’m nine. This is also where time stopped for me. I won’t grow any older. I won’t graduate from High School, attend college, get married, have a family or career. The impact I have on the world is from a frozen state. I have a story to share, but no longer the voice to present it.
It was a Monday afternoon and I found out I had cancer, Acute Lymphoblastic Leukemia (ALL). By that evening, I was in the hospital in the bone marrow transplant unit. I was seen by a second-year resident who would only see me one time because of a rotation change. She attached a label to me that would impact my care and cause my providers to anchor in a diagnosis that wasn’t correct.
Most of the care I received in the hospital was great, but you know how quickly things can change. The last sixteen hours of my life were excruciating. I acquired a c. diff infection, was a classic case of failure to rescue, became septic and had typhlitis. All the while, my care team was anchored in the label attached to me on my first day in the hospital. It is now Thursday, ten days later, and I am dead. I did not die because of my leukemia. I died because of multiple medical errors.
I don’t want to focus on my clinical care; but rather, what happened after I died. There was no transparency, no disclosure, no discussion about what went wrong in my care. My parents walked into the hospital with me and returned home without me.
My Mom has tried to explain to me that transparency is like cellophane what you see on one side you should be able to see on the other. This didn’t happen for me. It took the organization where I died three years, seven months and twenty-eight days for them to have the first honest conversation regarding my death. This is no way to learn and make changes in the system to protect others. This was no way to treat my family.
I share my story now to make healthcare safer for others, train future providers, and make sure honest and transparent conversations are held after medical harm. You see three years, seven months and twenty-eight days was the old way of transparency. The new model for transparency is cellophane.
Alyssa Rose Hemmelgarn