In 2003, I lost my mother to a preventable medical error. During a hospital admission, she received a larger-than-intended dose of medication that caused her untimely death. As much as I was devastated, I was just as driven to do something with the pain that I felt. I wanted to make sure that no other family experienced what mine had gone through. I contacted a cousin of mine, who was a doctor, to see how I could get involved. He recommended that I reach out to my local hospital. In 2006, I did just that and was eventually connected to the Minnesota Hospital Association and the Minnesota Alliance for Patient Safety (MAPS). Leaders within those organizations invited me to be part of the MAPS patient safety conference planning committee. I was willing to volunteer and work towards improving safety for patients and families. However, because of our family’s settlement with the hospital, I was not allowed to share my personal and powerful experience with medical error.
I continued as a patient partner for subsequent conference planning committees over the next 10 years. In 2015, I participated in the MAPS Patient and Family Engagement Committee where we worked towards creating an online toolkit to inspire organizations to include patients, residents and families at an organizational level. That work resulted in this very website. I also sat on the MHA medication reconciliation committee in 2016 to make a contribution.
But my greatest contribution was being able to finally share my mother’s story at the MHA/MAPS “Include Always” event in 2016. MAPS staff helped me to reach out to the hospital to determine if they would give me permission to finally share my family’s experience. I was overwhelmed when the CEO responded positively and agreed that it would be a powerful way for people to learn how to improve. Her letter was kind, sincere, and created an immediate sense of healing for my heart that I otherwise wouldn’t have felt.
Up until that point, no one from the hospital had ever said that they were sorry to me or my family for the mistake that had occurred. I believe that the most important words that patients and families want to hear following a mistake are “We are sorry.” It was a moment that didn’t take my pain away, but instead brought forth a renewed sense of personal healing, as well as hope for our health systems to address errors in a way that supports families.
After I told my story at the event, the emotional reactions I received from the healthcare professionals caught me off-guard. It was healing for me to be able to finally share what had happened and to know that it would impact others in a positive way. When I was asked to write this article, I was surprised at how re-visiting the paperwork triggered so many emotions, even 15 years later. The hardest part of this journey has been the way it has affected my trust in the healthcare system. More recently when my husband and daughter struggled through their own health crises, I realized how the error that caused my mother’s death creates distrust and fear when I need to make healthcare decisions today. The impact of medical error might fade over time, but it never goes away.
I am so grateful for the opportunities I have been given over the years to partner with the healthcare system as they look for solutions to safety issues. Together, we will go a lot further.