Medical error can have devastating effects. Here, in their own words, Connecticut families tell the stories of how medical error changed their lives forever.
November 1 of each year is the anniversary of the day that we were all impacted by catastrophic medical error and our lives were changed forever – in 1991. On that day, in a prestigious teaching hospital, my 37 year old husband, Rory, went in for what the surgeon described would be a routine, commonly done decompression of the spine. Unfortunately, after I said “good luck, I love you” to him that morning, and somewhere after the surgery began at 7:00, the surgeon lost his way! Apparently, he couldn’t find what he thought that he was looking for, was operating at the wrong levels, caused significant blood loss and, after about 18 hours in the Operating Room the patient, Rory, a husband, a father, a son, an entrepreneur and a smart, funny guy was brought to the ICU. Later, we would discover that Rory was paralyzed from the waist down and suffered brain damage. A few days after that, we learned that he had developed a surgical site infection that required another surgery to debride it, and several more surgeries as time went on.
That day changed all of our lives forever. Rory suffered a great trauma to his body. It impacted his whole person, his very being, not just his back. For him, every day from that day forward was a struggle, filled with intractable pain and many obstacles. But he was strong minded and strong willed. He came up with ways to do some of the things that he used to do, just differently. He retrained his body and eventually began getting some feeling back in his legs and through countless hours of physical therapy was able to stand, and then walk a little bit. His thinking improved a bit too, as the result of hours of “brain training” that was done on his own and with therapists. But much of his time was spent getting around in a wheelchair, or using a trapeze to move about in his bed because to do things that we all take for granted required so much effort and time for Rory. The pain never went away – in fact, over time, it got worse. Over the years he developed many chronic conditions as a secondary consequence of his acquired injury. Ultimately, after 18 years, he passed away from respiratory failure, congestive heart failure and kidney failure that was the sum total consequence of the spinal cord injury that he suffered so many years before.
His story and his ultimate death is not where the consequences of his medical error ends. There is also a story of our two children who were eight and three years old when his surgical injury occurred. And there is my story as well. Frankly, all of Rory’s friends and relatives, colleagues and acquaintances were impacted by this event. Rory no longer had the energy or capacity to focus on everyday activities and social events that we all participate in without giving it a second thought. He was exhausted just from getting through each and every day. Our children lost their dad, as they knew him, who now needed so much support to get through a day that they lost part of their mom too. I lost my partner and my soul mate, who I shared so much with and who I now was a fulltime caregiver for. Everything that happened to Rory affected more than just him. His children were not able to play catch with him anymore. My son would throw the ball and if Rory missed, my son would get it and hand it to him so Rory could return the throw. Rory could never go camping with his children, as he and I did before they were born, and expected to do with them as they got older. He couldn’t work again, his excellent memory was diminished and his thinking was now slower.
They say that from bad things often come good. Since Rory died in 2010, I have been deeply involved in patient advocacy. I hope that I can take my experience and passion and improve patient safety and the delivery of care. Among my activities, I am currently the Executive Director of the Connecticut Center for Patient Safety. I have chosen to make my personal primary mission the empowerment of patients and the patient voice in healthcare. And I use my voice to represent the patient voice at various forums. If I can take one lesson from Rory’s life, it would be that in all the years that I provided care to Rory, he and I were the glue that held his care together. No one provider had the overall perspective that only we (the family) could have. With all the medical expertise that our doctors held, it was imperative that we were part of all of the decisions. As Libby Hoy of Patient and Family Centered Care Partners said: “Patients and their families are the most underutilized resource in healthcare.” Through educating the many stakeholders involved in health care, including the patient, I hope to change that!
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