Author: Kim Lynette Sandstrom
A few months ago, Dale Micalizzi, the courageous mom, who took a stand on behalf of her son, Justin, invited me to become a member of PIPSQC and join the PIPSQC Ambassadors. I heartily agreed, but then took my own sweet time to write the blog she had been patiently asking for. It was one of those things that I could not quite wrap my brain around what to write. I kept thinking, what do I have to add to the discussion, nearly 9 years after our light, Diana Brookins, died from an upper biliary duct injury, from the removal of a single gallstone, and a central line infection following the birth of her only child. Diana died on National Patient Safety Day, 2004, July 25th. It took the 11th hour invitation to the Patient Safety, Science & Technology Summit 2014, to be the catalyst for me to honor Dale’s request.
Many in patient safety advocacy know bits and pieces of Diana’s story, but there is a back story that soon I will be able to tell, and this little blog contains the DNA of what I will be sharing, and the spark of being able to write about all of this, took place this weekend, in Laguna Niguel, CA at the Patient Safety, Science & Technology Summit.
On Friday, January 10th, I received a message that the Summit organizers wanted me to be at the Summit. On Saturday evening, I arrived late. The next morning, I woke up ready to go! Breakfast was first, and I dug in … not into the food, but into the subject at hand. A team of doctors was at my table. We all introduced ourselves, from Lithuania, Germany, Texas, California. My turn came. I introduced myself. I am not a “medico”: I am mom. I am the mother of a heroine who died at the hands of modern medicine. It was slightly uncomfortable, but we small talked our way through. I am used to telling the story and used to “not crying” in public anymore. In fact, I have gotten pretty good. I noticed, as the day went on, you could “suss” out the ones who were approachable, with patient advocacy chief on their mind, and you knew the “suits” who would be uncomfortable.
You see, as time has worn on and on, and I have been worn out to the nub with anger and disbelief, I have had to change. I have had to take my ferocious, tiger-mother anger, and demand for immediate change to another level. I had to or I was going to be another victim of this tragic story, and my daughter lived long enough to give her own baby life, and I had to live for them both. I had to find another way. The way I have found has given me another perspective at the injustice of medical harm and error, and it has brought me to one central conclusion: patient safety and health is not a technology problem. It is not anything but a human being to human being problem.
It was listening to Joe Kiani, CEO of Masimo, (who made me listen and listen well), that helped me move ever more incrementally to my new vista. This soft-spoken Iranian-born man, spoke about a four-letter word that I never thought I would hear at a patient safety summit involving the biggest players in medicine today … but that four-letter word is the same one that brought me around to life again. It is the same four-letter word I would use for Mother's Against Medical Error (MAME) President, Helen Haskell, when she found me, on the emotional pavement, and helped me stand up and walk forward again. It is the same four-letter word I use to describe the heroics of the nurses and some physicians of the 100’s who treated Diana over 110 days. It is the essence of our self-esteem, the essence of the milk of human kindness. It is the same four-letter word that that medical renegade, Dr. Patch Adams speaks of. It is the only word I use to describe my feelings for my daughter, Diana. That four-letter word is love.
When I heard Kiani, wax rhapsodic about the potential of an industry/healing profession that was rooted in love, I about fell out of my chair. You could barely contain me. He had my attention. What’s more, I did not choose to believe he was paying lip service. I chose to hear the word love for all its value. I chose to make it about love too. In essence, he was saying that the culture has to change from the bottom-up, top-down, inside out and right side in, and, yes, to use new-agey terms, it is about intentions, transparency, trust, honesty, forthrightness, respect and a new way to think about each other.
You see, when I am asked, what would have saved Diana’s life in the hospital, I almost always answer: “If the doctors had simply stopped, opened their healer’s heart, and listened to Diana. If they hadn’t believed they were the ONLY expert in the doctor/human relationship. If they had trusted Diana to be a reliable witness to her healthy 25 year old womanhood. And if they had believed her and acted in a timely manner, she would be with us today.”
Oh, I know love is a funny word, and interpreted many different ways, but there is a love of humanity that is embracing and encouraging and uplifting and renewing and healing. This, I believe, should be the calling that one who enters medicine should hear in the deepest parts of themselves. We need to vet those who enter healing, teaching, preaching, protector professions in a way that is superior to anything we have done before. We need to help make better human beings.
I can tell you what it looks like too. It is two people, who collaborate, patient and healer, to find the best path of healing for the patient. It is the same winning relationship that many successful organizations have, and we need to distill this healthy, working relationship to healer and patient. It will take galactic changes, moving forward, moment by moment and in increments, but it will happen.
Something else I like to share when I speak about patient safety is the similarities between MAME and Mothers Against Drunk Driving (MADD), and I hope it gives encouragement. About 3 years ago, MADD announced worldwide that since 1985, DUI accidents were down nearly 50%. I was astounded when I sat and thought about it. That means you and I are safer than at any other time in US history, from a drunk driving accident. We are safer in a hospital than we were 5 years ago, but not nearly safe enough. Our hope, (Justin’s Hope), and dream is to make it happen. It can happen. It takes time. But it can happen, and I intend to make the bedrock of the work I do, laid on a foundation of love. Love is the new weapon, friends. Love wins.