Mother Who Lost Son to Medical Errors Advocates Disclosure

I recently watched a YouTube video of Leilani Schweitzer speaking at a TED Conference.   Leialni lost her son to medical errors at Children's Hospital at Stanford University.  In her video, Leilani described the death of her son, what disclosure meant to her, and how she is currently consulting with Stanford on disclosure cases.  My immediate response, "Wow, Leilani totally gets it....she is one of those rare people who understands how medical errors impact all stakeholders, including caregivers, and what disclosure can do for everyone."  So, I invited Leilani to pen a piece for us, and it can be found directly below.  Please share this powerful essay with colleagues and friends. Best,

- Doug

By Leilani Schweitzer

Almost nine years ago my son, Gabriel, died at the Children’s Hospital at Stanford University after a series of medical errors. Almost two years ago, I started consulting work with the Risk Management team at Stanford. Using my own experience with medical errors, I attempt to navigate between the often black and white legal and administrative sides of medical error and complication; and the grey, emotional side of the patient's and family's experience.

When explaining my work at Stanford I have heard, “So, you are trying to avoid lawsuits.” Often the phrase is accompanied by a dismissive expression and tone. I reply, “You are right.” But avoiding lawsuits does not equal dodging responsibility or denying consequences. It is about recognizing the short and long term needs of everyone involved— patients, families, care givers and administrators. Medical errors impact all of us. By being open, honest and deliberate, we can keep bad situations from getting worse.

My work with Risk Management at Stanford has shown me the “other side of disclosure,” some may say the “Dark Side.” But what I have found are wise, thoughtful, compassionate people faced with complex, often heart breaking challenges. None of the work they do is simple or without consequence, and they are keenly aware of that responsibility.

Of the cases I have seen handled by Stanford, the most challenging and frequent— are the ones where complications happened but not because of negligence or human error. In these cases, an extensive investigation reveals there was no error, no system failure; there is no one to blame. These are the situations that illustrate the risks that are inherently part of health care— the truth that nothing goes 100% right 100% of the time. Often, these are the cases that patients and families struggle the most to understand, and may result in claims. These claims have no merit and will bring patients and families no satisfaction. Unfortunately, no amount of transparency and compassion is enough to help them.

In working with Stanford, I often consider what might have been. What would my life be like if Gabriel had died at another hospital? What if the hospital had responded typically — with deny and defend? What if getting answers and explanations about Gabriel’s death had required lawsuits and court dates? The past eight years would have required reliving and dwelling on an exceedingly painful event. I would not be taking what I learned from Gabriel’s death and using it to help other people, I doubt I would be any help to anyone. Yes, I am for avoiding lawsuits, and for taking responsibility.

It is, of course, challenging to find even a tarnished silver lining in a child’s death. But Gabriel dying at Stanford eventually became a glimmer of brightness. The disclosure and collaboration they presented to me eight years ago was radical at the time and sadly, in most places still is. But we can’t wait any longer for disclosure and apology to become mainstream. We also need to accept that medical care, by its very nature is risky, and that complications can and do happen. Often those complications are the fault of no one, but happen because medical care often deals with complex uncertainties, and like life— comes with no guarantee. But we know, sometimes mistakes do happen. And when they do, errors present not only disaster, but also opportunity and obligation. By being open and transparent after medical mistakes we can work to prevent them from happening again, making all of us safer. By being compassionate and truthful, we can be our highest selves— to treat others the way we all want to be treated.

I only work on the very edges of healthcare— so I can only imagine— it feels good to face risk and be the hero: to remove a tumor, to master the latest technology, to save a life. But it is just as challenging, and requires as much bravery, to be the anti-hero— to be the one who makes a mistake, the one who owns up and admits to an error, then works to make a change. Hospitals, care givers and all of us, should be judged not only by our great successes, but also by how we respond to our failures. Life is full of complexity and mystery. How we navigate this truth and how we treat each is what can give our lives richness and consequence.

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To watch Leilani's YouTube video, click on this link.  It's powerful!