While watching the news coverage of the anniversary of the death of President Kennedy the correlations between the assassination and the ongoing struggles of the patient safety movement were impossible for me to ignore.
President Kennedy was a man who knew great personal suffering and loss and the ravages of physical injury and illness. He faced adrenal insufficiency from Addison’s disease, a debilitating back injury in the war, the loss of his oldest brother in a military operation, and the death of a sister in a plane crash. Kennedy experienced chronic pain, a serious back surgery that resulted in a life-threatening infection, and the reliance on medications with significant side effects.
Watching his vibrancy in the face of these obstacles, it seemed that anyone could overcome their limitations and rise above any challenge. He made it possible to believe that every situation could be negotiated or governed in a way that would result in our eventual victory. John Kennedy was aware of the demands that an ever-changing world placed on our country, and worked to find solutions. There were no excuses about the difficulty involved – only calls to action. The president also clearly voiced his opinion that Americans had a duty to serve their country – and each other – via public participation.
The political time was filled with the unpredictable actions of other world leaders and the resulting uncertainty and turmoil. Americans experienced the feelings of helplessness that go hand-in-hand with political instability. Regardless of whom you were or what you valued, forces outside your control had the power to change your life in irrevocable ways. The country lived in fear of nuclear attack, civil rights issues were challenging our accepted norms on race relations, and Vietnam was a simmering threat to the lives of our nation’s young people.
In the wake of President Kennedy’s death, the entire world faced the same stunned shock and confusion that patients and their loved ones experience in the aftermath of medical harm. What Americans believed – that our young, confident president would lead us into a new and better world – was shattered by a senseless act. What patients assume to be true – that there is no safer place than a hospital for those facing illness – continues to be turned upside down by the harm caused by largely preventable errors. When a basic tenet of your belief system is shown to be fallible, nothing seems to make sense any longer. Regardless of the origin or the specific circumstances, the resulting mental and emotional upheaval alters your psyche in an indelible way.
The resulting inquiries into the assassination eventually resulted in a widespread loss of faith in the very institution that was the keystone of the American way of life. The public lost confidence in the government as investigations seemed shrouded in secrecy. The public wanted answers to their questions and were met with explanations that gave them even more doubts. The public wanted some type of resolution to the tragic event but soon realized that they were unlikely to ever have all the facts. Americans wanted assurance that a similar situation would never happen again to anyone else – goals shared by every harmed patient I have ever known.
I heard many journalists question why the assassination still attracts so much interest and attention five decades later. The events still resonate with me because I feel that I have a sense of the fear and disbelief that the world felt at that moment – as do all of those affected by medical harm. The feeling is universal to those who continue to experience health care harm that is out of their control and damaging beyond comprehension. Every person touched by medical harm has felt disillusioned and disenfranchised at some point in their journey. Let’s be sure that they do not also feel dismissed by giving a collective and focused voice to their experiences.
The Empowered Patient Coalition recognized several years ago that the patient voice was largely absent when evaluating the extent and the effects of medical harm. We created a survey to capture the patient and family view of medical harm as it is often different than the perception of providers, hospital administrators, and other recognized health care experts. Our survey has over 700 respondents to date and provides a wealth of information directly from those who have lived through the experiences. The survey is a testament to the willingness of people to re-live extremely painful situations in order to join hundreds of others in sharing their stories and solutions in the hope of making their voices heard. We ask anyone who has been touched in any way by medical harm to complete our survey and help continue the quest to give patients and families a greater voice in health care safety and quality improvement efforts.