Leilani Schweitzer’s 20-month-old son Gabriel, died due to a medical error made at Lucile Packard Children’s Hospital at Stanford in 2005. She previously shared her story at a TEDx event. Leilani, who is now The Risk Authority Stanford’s Assistant Vice President, Communication and Resolution, was recently on Ted Radio Hour’s show about Transparency and shared how her experience led her to TRA.

Gabriel died a long time ago, it happened in the same days Hurricane Katrina slammed into the Gulf. I have had time to process it: I spent a lot of money on therapy; ran a lot; made art; learned to snow board; and I went to Burning Man. I have had the opportunity to heal.

Unlike others in my situation, I am fortunate to know most of what happened to Gabriel—I know because I was told. He died at a hospital where people were brave enough to face me and not be afraid of disclosure—bold enough to take responsibility and be accountable. Because of this, I consider myself one of the lucky ones.

I think about people who have not had the same opportunity to know and understand. I have met some of them, people who still have questions about what happened. Questions that, after a time of not knowing, have morphed into monsters—huge, menacing, life-sucking monsters. These people are far from healing, they need a lot more than snowboarding and a good therapist. They need the truth.

After Gabriel died, Stanford didn’t hide behind legal maneuvers as they easily could have done. They could have gone silent, dismissed me and hoped I couldn’t gather myself enough to file a lawsuit—it would have been a safe bet. Instead, they investigated, explained and apologized. They made improvements to ensure the children in their hospital would be safer. When the weakness in the monitors that led to Gabriel’s death was discovered, all other hospitals using that same equipment were alerted to the dangerous circumstances. Maybe it helped someone else—I do not, and will never know. But it still comforts me.

Today, I advocate for transparency in healthcare because it helps us to see the whole story. It helps us learn, find system failures and act to fix them. Disclosure, transparency and compassion should be the Standard of Care for responding to the unexpected in medical care.

But, how is it that telling the truth is seen as bleeding-edge innovation? Hospitals being transparent after the unexpected happens should not be revolutionary. It should be mandatory. Extending care to the people involved in errors should not be considered heroic or exceptional, it should simply be done as good patient care.

Seven years ago, I began working with TRA Stanford on the communication and resolution program we call PEARL. I help to take care of people when their care doesn’t go as planned. It is complex, challenging work, and I am grateful for the opportunity to do it. Stanford Health Care goes to great efforts to understand and explain what has happened in a patient’s care. Over the years, I have learned that the first telling rarely tells us much. It is only after careful listening and research do we come to know the whole story.

Every hospital could employ a person like me. Every hospital has someone who suffered something terrible and is looking to find meaning in their experience. While my professional background is not unique, there is a lot unique about the experience I bring to my work.

It was bold for TRA Stanford to invite me to be part of their team, to invite and encourage my perspective, not just for a visit, where I could tell my story, remind everyone of the high stakes of healthcare, then go away. No, The Risk Authority Stanford has given me an opportunity to be more than a reminder, or just a nuisance. They have given me the opportunity, actually a career, to share what I have learned from the most challenging experience of my life.

By Leilani Schweitzer
Leilani Schweitzer is the Assistant Vice President for Communication & Resolution at The Risk Authority Stanford. Leilani did not choose a career in health care, it chose her. In 2005 her son, Gabriel, died after a series of medical mistakes, now she works in Risk Management at the same hospital where those errors happened. In her work with Stanford Healthcare’s Risk Management, she uses her own experience with medical errors to navigate between the often insular, legal and administrative sides of medical error; and the intricate, emotional side of the patient and family experience. Her work at Stanford Health Care gives her a unique view of the importance and complex realities of disclosure and transparency in healthcare. Leilani’s TedX talk about the need for transparency and compassion in healthcare has been viewed more than 75,000 times.