Trine Engebretsen was clinging to life. It was the early 1980s, and the girl had a genetic liver disorder that would kill her if she did not get a transplant.
Yet, as she waited for a matching liver, some providers called her parents and urged them not to allow the surgery. They cautioned them that Trine would be "mentally disabled, handicapped, mutant. She would never be a normal little girl," Trine recalled at a TEDxBeaconStreet event in Boston last month. A psychologist said she would be better off if allowed to die.
She and her family persevered. Having visited 13 hospitals before receiving a diagnosis, locating the one doctor in the country willing to perform the transplant on a child and then sparking national efforts to create organ-matching networks, they were not ready to give up.
Today, Trine is nothing like the "Frankenstein’s monster" that others foretold. Florida’s first liver transplant recipient is now married with two children. She is a surgical resident in Georgia who plans to apply to a transplant fellowship. For the past 18 years, she has been off immunosuppressant drugs and spared of their side effects.
Her story was one of 15 talks at the event that explored the theme of "Thriving Over Surviving" in health care. One of the common threads was the message that, to achieve great things, people have to push beyond what they think their limits are. We heard from Justin Constantine, a U.S. military veteran who survived a horrific gunshot wound to his face in Iraq and at one point was thought to be dead. Ten years later, he is happily married, a recent graduate of Georgetown University Law Center and a motivational speaker who considers himself "the luckiest person" despite his misfortune.
These were inspirational talks, and it was a privilege to share the TEDx stage with these speakers and discuss our work to end preventable harm. Much of the hoopla around patient safety has focused on checklists, technologies and processes. These are mostly easy to grasp. But none of our major successes have been possible with something far less tangible. I call it believing and belonging. We have to believe that we can open a closed door — for instance, convincing ourselves that some complications are not inevitable. And we need to create an atmosphsere of belonging, through connected communities of health care professionals that are based on trust, humility and a common desire to redefine what is possible.
Please take a little time to watch the videos.
I wish when wrongdoing is evident that the power of licensure review would be used. For instance veterans await for years the VA to discipline wrong doers in its system. USAToday just came out with an article saying that VA bosses are still ordering records to be altered. I bet this would stop if bosses with RN's and MD's had their licenses diciplined for misconduct. All kinds of misconduct on the management level could be held accountable. Not just at VA but all hospitals.
This may appear to not be related to your article but the article spoke of opening closed doors, of creating trust and of redefining what is possible. The lack of accountability for those who abuse power has been at the core of patient safety issues. The fear of retaliation, etc. Maybe the above could enter the discussion.
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