I often write about the health care challenges of my late daughter, Katherine Eileen Hallisy, who fought cancer five times by the age of ten. The reality is that three generations of my family have been touched by medical errors that included life-threatening infection, delays in diagnosis, and failure to rescue.
The reality is that three generations of my family have been touched by medical errors that included life-threatening infection, delays in diagnosis, and failure to rescue. I haven’t shared this part of my story until now because it seems almost impossible to believe that tragic medical events could happen several times in the same family. In the course of my patient advocacy work I have now met many others who share this unfortunate fate and our stories need to be told – because they are both heartbreaking and often preventable.
When I began my patient advocacy work, I fully expected to be retired by now. Surely, the disability and loss of life from unsafe medical care would no longer be tolerated once the magnitude of the problem was exposed. And in 1999, the Institute of Medicine (IOM) report To Err is Human: Building a Safer Health Care System did just that. This ground-breaking report alerted the public to the ever-present danger of medical errors and put a human face on the resulting tragedies. For perhaps the first time, the public began to realize that medical harm represented a serious threat to their safety and an ongoing challenge to our health care system. This report validated what so many of my family members had experienced first-hand, and continues to fuel my patient safety and advocacy efforts.
I promised my daughter that I would share with others all the lessons we learned during her illness. In 2008, I published my book, The Empowered Patient: Hundreds of life-saving facts, action steps, and strategies you need to know. In 2010 I founded The Empowered Patient Coalition non-profit to inform and empower patients, families, and caregivers. I know first-hand what it feels like to struggle at the bedside and to live with the fact that the things I didn’t know may have allowed harm to reach my loved ones. The voice of the patient is often overlooked, but it is essential in finding solutions to the formidable challenges facing our health care system.
Learn more about Julia Hallisy.